In the spring of 1997 my father, “Raymond W. Holman Sr.” began showing signs of memory loss. Within months he went from a very independent man to someone I was afraid to leave by himself. For the next four years, two loving caregivers made certain he was able to live a life of comfort and peace of mind. My father passed away in August 2001. This project is dedicated to those very unique true human beings who have the understanding that we all deserve to be treated well. In all I captured 58 portraits of family caregiver in 2008. It became a one person exhibit at the African American Museum in Philadelphia Pa. In 2013 there still is no cure for Alzheimer’s disease or other forms of dementia. Which means there will be an ever increasing need for family caregivers in this country and around the world. It is not abnormal that the caregiver dies before the person they are caring for. The reason for this, family caregivers often develop the habit of forgetting to take care of their own self. At least two of the caregivers in the project from 2008 have already died.
I am about to start the second leg of this project. Which will include capturing formal portraits of family caregivers, and capturing motion interviews of them sharing their experiences as caregivers of someone with memory loss. One of my intentions is to bring out some of the positive aspects of being a family caregiver. I think this is very important because if human beings only focus on the negative aspect there is danger in losing touch with the goodness of Life.
I was once told I loss my own self during my caregivers experience and for years after, which is likely true. But as a result of the experience this project is moving forward. Stay connected to this blog.
MISSION STATEMENT
Kill Alzheimer’s/Dementia.
Alzheimer's disease and dementia by Raymond W. Holman Jr. 
118 Comments
This blog is dedicated to my father Raymond W. Holman Sr. who passed away in 2001 with the disease dementia. His doctor in 1997 told him he had earlier signs of dementia. Shortly thereafter I had to hire two women to be his full time caregivers at his home until the day he died August 16, 2001 around 3:00PM in the living room of his home.
The Portrait of Caregiver’s Exhibit opened on May 8th 2008 at the African American Museum of Philadelphia. The exhibit was suppose to be on display for 30 days. Because of the amount attention it received it was held over until August 2008. The Philadelphia Inquirer Newspaper and the Philadelphia Tribute Newspaper reviewed the exhibit.
I sometimes wonder if one day I will forget who I am or where am I. Will I one morning after shaving look in the mirror and wonder who is that person in the mirror. One day daddy was shaving in his kitchen after he finished I held the mirror up so he could take a look at the job he did. He had no idea who the person he saw in the mirror was. He asked “who is that?”
I sometimes wonder who will watch over me. Once in 2008 late one night I could not remember where I parked my car in Washington DC. The parking ticket did not have an address on it and I was in a strange city. Not really paying attention to the landmarks. I did not find my car until the next day. I actually thought I was showing signs of early onset of memory loss. The real problem ended up being I just did not focus to where I had parked the day before. I had been excited about being in Washington DC for the swearing of Obama and capturing images on the Mall.
I was talking to a friend yesterday. His father developed Alzheimer’s disease. He shared a moment with me. He was in the basement of his father’s home one day. His father walked down the stairs into the basement with a gun in his hand. His father did not recognize him. Luckily the gun was not loaded.
Last year I was talking about this project with Terry a friend of mine. He share a moment. He was standing at the intersection of Broad and Arch Street. He watched a older woman go against traffic as she crossed Broad Street. He finally had a chance to speak to her. She said she was there to meet a friend shortly. The other thing she shared was she could not remember where she lived.
Two years ago I was in the northeast section of Philadelphia at a Wawa store parking lot sitting in my car. An older woman walked up to the passenger side of my car asking for directions to City Line Ave. I gave her directions. Something said I should have her follow me to where she was tying to get to. I told her to wait I would drive in my car and she could follow. We finally got to the location. She asked me if I would come inside to meet her husband. Because I had been so helpful.i agreed although I felt strange about the request. I walked her to her apartment she introduced me to her husband. He was shocked and upset to some extent. She had leave their apartment over six hours ago to go to the store two blocks away. I found out she had early signs of Alzheimer’s disease. I had no idea that was the problem. Why was I chosen by the Universe to help this person find her way home?
Join me in New York City on June 26,2013 @ the Alzheimer’s Foundation of America conference.
Someone asked me for information about the Alzheimer’s Foundation of America’s conference which is being held in New York City on June 26, 2013. Her mother developed dementia recently. Her mother was in a nursing home but she had to remove her, per the facilities request. Does this have a familiar ring?
Do you know some states in America are willing to play family caregivers to take care of their stricken family member at home? Pa. is one of those state. Find out if your state is.
I have been on the computer for the last few hours working on ways to spread the word of caregivers and memory loss.
A new drug trail for the prevention of Alzheimer’s disease as reported on NBC moments ago. The trail is taking please in St Louis the trail will last two years
The exact information for the Alzheimer’s Foundation of America’s conference is June 26, 2013 at the Marriott Marquis in Time Square.
Just spoke to a friend about one of the caregivers involved in my 2008 project. Was informed she had passed. I was sad for a moment. But then the realization came I have more work to do. Keep working on this project. That is what I have to offer to the Universe. The capturing of family caregivers of people with Alzheimer’s disease/dementia.
I was recently asked what do I have to offer to this path. My answer is, ” years of making certain daddy was OK.” Years of documenting people with memory loss. The gift of photography. And love of Self.
I am thinking more and more about life. What is it I can offer to the world. I know one is my photography I can use it to tell the story of caregiving.
Is there something that exist beyond the mind that we can dwell on?
One of things a caregiver can do to protect them self. Is to eact a fruits and vegable based diet. Do a google on a Dr. Fuhrman who stress a heslth life style. He is located in Pemberton NJ.
Another form of stress relief could be a daily meditation practice.
As away to treat my Self well. For years I have meditated right after rising from bed. Although I do not know what type of person I would be without this daily practice. I believe it has made me a better person. Mediation deals with the mind and beyond so let’s pray for the goodness of a health mind for all people.
Spent the last hour or so on social media. Informing people about the Alzheimer’s Foundation of America’s Conference on June 26, 2013 @ the Marriott Hotel in Times Square New York City. It is a one day conference which runs from 8:00AM until 4:00PM. I really encourage family caregivers to attend.
How can I use photography to add value to the world, I ask my Self.
When I would go see my father I would reach out shake his hand and asking him how are you feeling today. He would always say something like “I am fine” or “I am still here.” One spring day I asked him that same question and he looked up at me from the wheel chair he was sitting in and say “I am not doing well and what are you going to do about it.” His answer shook my core. Hearing his response was notice to me daddy was ready to leave this plane.
I was talking to a friend this morning, his mother has Alzheimer’s disease. She is in an assisted living home. She is in a section dedicated to Alzheimer’s care which is great to hear. He described his experience going to visit her as “unique because you see so many different interactions and actions from people with this disease.
It seems important to go beyond the thought of the mind.
I had a large raw kale salad today to help feed my mind. I am going to need it to move forward with this mission.
I am looking to connect with caregivers willing to be part of my portraits of family caregiver of people with Alzheimer’s disease and dementia project. Please feel free to respond on this blog. I am on the second leg of a book project. Anyone in the NYC area. I will have 7 portraits on exhibit @ the Alzheimer’s Foundation of America Conference on June 26, 2013. At the Marriott Hotel in Time Square New York City.
Hi-Spent 2003-2010 taking care of my mother-24/7. A hoot & a holler. The personality shows thru the dementia – even the parts of their personality you weren’t crazy about. She compensated for memory loss, etc. Pretty crafty lady.Had to also take over house which she’d neglected & which was falling down. A NY brownstone! I’m a grad of LU, maybe that’s what gave me the strength. And an only child! Yeow! What are the hours for exhibit in June? I have a pix for you too. There are great geriatric programs at the good hospitals, just requires research. Lots of people are embarrassed to admit that this is a disease within their family – Nonsense. You need all the help you can get. I didn’t meditate – had no real time, but I did make jewelry like a fiend & that calmed me. A blessing. Did I mention that for 9 straight months I had to do a complete renovation, restoration, and repair on the house but I had the best contractor. It ain’t easy! Oh by the way, I bought a Shih Tzu puppy for my mother because they are a calming therapeutic type of dog. My mother & the dog hated each other but the dog adored me – she is still wagging her tail and providing joy to me. See you in June.
I will be at the conference from 8:00AM until 4:30PM. I hope you will drop by and say hello. I will return to NYC in mid July to capture new portraits of caregivers for my book project. Please stay in touch with me. And tell other people, I am pushing to get a very strong response. It is extremely important.
Wow. Bravo Ms. Backus. They say you are never alone. Whatever you are going through someone else has or is experiencing the same or similar. I am an only child who moved back into the family home in 2011 to care for my parents. They too neglected the house. Unfortunately I cannot have any renovations done, but I’m pretty good with glue, caulk and a screwdriver. We adopted a cat. My mother never liked cats. She astonishes herself with the love she has our short hair. My father who had severe Alzheimer’s passed in March. I continue my journey with my mother.
Hello Stephanie. What is your e-mail address? The Alzheimer’s Foundation of America’s Conference is on June 26, 2013 @ the Marriott Hotel in Times Square NYC. From 8:00AM until 4:30PM. It is a free event. I will be there. If you have any questions feel free to call them. Also there is a family caregiver in Philadelphia who is interested in reaching out to you via e-mail. Her story is somewhat like yours.
Stephanie I will be in NYC this Saturday July 13, 2013 @ 20 WEST 22nd Street Manhattan
CALUMET PHOTOGRAPHIC from noon until 5:00PM capturing portraits of family caregivers. Please drop by. It will be a great event. It is free.
I will spend a portion of tomorrow looking for museums, major corporations, and galleries in United States and aboard willing to exhibit 58 portraits and growing.
I like that you are focusing on the positive aspects of care giving. It IS so easy to dwell on the negative, because of the added responsibilities, loss, and stresses related to taking care of someone who can no longer care for themselves–someone we miss so much.
As for me, I cared for my mother for 1 year long distance, 4 1/2 years in my home, and another 4 1/2 years in a nursing home until she passed in 2008. Some of the positives, and there were many — 1) I learned and practiced much more patience than I had in the past – and it has stayed with me today in other relationships. 2) I discovered that LIFE is not an emergency to be done only one way – flexibility of HOW we fold napkins, set the table, shop, do a craft, can meet the needs of various abilities. 3) I learned to allow others (not just my mother) change their minds and change their ways of doing things. 4) I learned that arguing with anyone – only causes them to dig deeper into what they have already decided. Arguing does not persuade and does not instill confidence, trust, and cooperation — Arguing does just the opposite. 5) I learned that just when you think you’ve tried everything, if you ask yourself, “If there were another way to do this, that I haven’t thought of yet, what would it be?” — that I’d invariably come up with one or two more ideas of how to handle a certain situation. and 6) I learned that I am not in charge. The disease will continue, the person will remain who they are and/or change, and there’s nothing I can do about it. Working against that principle creates problems – working WITH that principle, I can do many things.
Since 2008, I have gone on to train dementia care skills to other families and to professional care providers through public seminar – My work with my mother (and her unknowing work on me) – continues on – in the training I share with others.
Dee Mayfield, CDP
dementia.seminar@yahoo.com
I would like to thank you for sharing your comment. It is beautiful when a human being is willing to take care of another. I sometime wonder what my father’s experience was like. I hope he felt well taken care of and safe.
With high regards,
Raymond
My experience taking care of my mother was one of the most heart wrenching things that I had to do. What I had to do was to care for someone I loved dearly. If I had to do it again I would without hesitation. She was my mom.
Yes!
My mother was legally blind. But she said that she could see shadows of people. And in her mind she could see. She did not believe that she was blind.
This project will always focus on the Goodness!
I am presently working out details for the New York City and Philadelphia Portraits of Family Caregives of People with Alzheimer’s dementia disease image capture dates. Please stay in contact New York City will be in July and Philadelphia in mid June 2013. Please feel free to share this information.
I can feel the passion of your story. My mother is going through the stages, I’m her caregiver…It’s her wandering eyes that want to find answers for the questions of the day.I love her smile, and when she sings her favorite song, it makes my day…
I make every effort I can to be positive in nature. So I am thinking it has to be for some great reason or awakening that so many people are experiencing memory loss. So lets all of us treat them and our own Self with great respect and Love.
I never thought twelve years after my father passed, there would still be no cure for Alzheimer’s-dementia disease.
I had a chance to talk to a old friend today, Florence Collins Hardy. She was the wife of Russell Collins. I thought she moved out of state, but I was able to locate her. Unbelievable.
On May 25, 2013 from 1:30pm until 5:00pm I will capture portraits of family caregivers of people with Alzheimer’s-dementia disease. The location Calumet Photographic, 1400 Columbus Blvd. Philadelphia Pa. Contact Raymond @ 215-205-7414 to make an appointment. The images will used for a upcoming book. To learn more about Raymond and the project Follow on WORDPRESS @ http://www.1raymondwholmansr.wordpress.com/abou
I was visited by a good friend today. I started talking about my project. I shared with him the fact there is no cure. He asked if there was a way to prevent dementia. The only advice I could give is following a healthy life style, plenty of fruits, vegetables and exercise.
I was showing my photography at an event this eventing. A woman kept looking at it. I gave her a card because she enjoyed the images. She told me she worked for a hospice. I told her about my caregivers project. She gave me her card and said I should contact the director of location. I will.
The caregivers shoot on Saturday May 25, 2013 @ Calumet Photographic Philadelphia is moving towards being booked out. Feel free to contact me for a time slot.
Beyond the thoughts. What is their experience?
I would sometimes wonder did my father reach a place of peace.
It is a mistake to try to do everything by yourself. That sort of effort will certainly result in hardship. Ask for help if you need to. There are Souls on this planet who will say yes.
I was talking to a friend I ran into yesterday. He was a caregiver for both of his parents. They did not have memory loss. He told me after they died he had to seek mental health help because he had no idea what to do with himself. He had gotten so involved in making certain they were ok he forgot how to deal with his own Self.
I never asked my father what his experience was like with memory loss. Did he ever become fearful? I hope I was able to do everything I could for him. For the must part he was always so self controlled. Even with dementia.
What about those that experience out right fear as they experience the dementia. A cure must be found or away of living with the disease but still experiencing some form of peace.
I have become aware of the fact I need to get information on my father’s experience with dementia. My sister just shared, one of daddy’s experiences. He told her once, he went to the supper market but did not remember going. I take it he saw the bags of food in the kitchen and that is how he knew he went to the store.
Is it possible this disease causes one to also pursue their own true Self? As everything else does. How can it not be?
For the last couple of weeks I have wondered if meditation would have any type of positive affect on people with memory loss. Studies have been done one was at the University of Penna. I believe in 2010 showing it can be of benefit.
I was not prepared for Daddy to die when he did. Maybe that is why I still have dreams that he is alive. I really need to get myself together. I went thru a slow decline in happiness. Whatever it was, I was receiving in helping Daddy, I have not been able to replace it.
I was at an Alzheimer’s associate meeting this morning in Philadelphia Pa. The statistic on Alzheimer’s/dementia is scary to me.
I was shooting test portraits yesterday. The person mentioned the story about my portrait project appearing in the Philadrlphia Daily Newspaper. Then she when on to mention Alzheimer’s seems to run in her family. She is kind of resigned to get it later in life. I was shocked. She is about 25 years old.
Somewhere in this loving Universe there is a cure for Alzheimer’s – dementia. That is the Law.
I felt a lot of distress earlier today working on this project. I realize now the reason was, I forgot this project is the gift the Universe wants me to complete and I should have Faith. When I read stuff like this I post I sometimes feel odd and self-conscious. But the fact remains during those moments quiet when the Ego does not come into play I feel comfortable. Manohar do not be afraid.
I was with Florence Collins Hardy last Wednesday at the Alzheimer’s Foundation of America Conference. She came to help me although she has some very major health concerns. That to me was an act of Universal Love. It seems I realize at this moment everything is about how you think about a situation.
This project is one of the most loving things I can do at the moment.
I will be in NYC on Saturday July 13, 2013 from 12-5PM. At Calimet Photographic Manhattan location. 20 West 22nd Street. Capturing images of family caregivers of people with Alzheimer’s – dementia for a documentary I am working on. This is a free event. Please come it is a story worth being told.
OM to the family caregivers/caregivers of the Universe.
When I post a new image of a caregiver I have the habit of looking at it over and over again. I am not certain what I am looking for. Maybe I am looking to see if the did the best I could in capturing that particular moment. Can I see and feel that person. Can I feel the Light that moves them to be a caregiver?
The true nature of the Universe is compassion. One way of witnessing it is by watching a family caregiver.
What is beyond the mind? What was my father’s experience as he was losing his memory?
Alzheimer’s disease and other forms of dementia strike African-Americans at a higher rate than another group of people.
From: helen z
Date: July 10, 2013 7:58:08 PM EDT
To: holmanjr@voicenet.com
Subject: Your project
Dear Mr. Raymond,
I am very grateful that you are doing this project because many people do not understand that it takes a lot of courage to take care of an elderly person who is not the person anymore who they “used to be”. I did a nursing assistant course as a precursor of an nursing degree which I did not pursue in the end. When I was doing my 50hrs intern, I saw the devastation of this disease Alzheimer’s first hand. Many people turn their heads when they see an elderly person sitting in a chair drooling, being fed like a baby, or they soil themselves because they can not find the bathroom. I heard many nursing students complain that they did not like this part of the education at all. This really got to me…. It is not glorious at all, you can say it is plain out dirty, physically and mentally exhausting. Most caretakers are undervalued and they are really under paid. It is so sad since all of these people they are taking care off where once productive members of society. Some where teachers, truck drivers, businessmen, doctors and lawyers. Most of them where fathers and mothers providing and taking care of children. But at the end of the road most are tucked away and forgotten. Many elderly people are lonely. It takes a very special person to take care of Alzheimer’s patients. And most people do not understand that the people that do this big job must have a very big heart. People should understand that it could be them and to respect the patient with Alzheimer. The Alzheimer’s disease does not discriminate in gender, race or social status.
Thank you for making an effort to show to these caregivers that they are very special people. I think it is fantastic that you regonize these people. Thank you, and to all the wonderful caregivers in the world !
Sincerely, Helen Kennedy
We always have a choice as to the decisions we make. It is hard to believe at times, but they say it is true. Lets all try to make good decisions when it comes to taking care of each other and our Self.
Dear Mr. Holman,
I was unable to attend your event on July 13, but I wanted to say thank you for the wonderful job you did. It was moving to see the photographs and read your comments. It was both humbling and uplifting to read your comments on what the caregivers are doing and have gone through while caring for their loved ones. Love is really an action word!
Thank you and keep up the wonderful work you do.
Carol
Yea!!!! Success…I got the article on my other browser….should have thought of that sooner. Really nice article, Raymond. Wonderful stories….great work to bring awareness to these wonderful people!!! Lisa
Raymond….. these photos and descriptions are wonderful….so glad that you
pursued your passion.
jlw
Thanks, beautiful work, love the site!
Hi Raymond,
My sister’s and I just returned today from a nice relaxing vacation, the first since I began caring for my mom. Upon checking my email what an absolutely wonderful treat to see your email and the pictures of we caretakers. I could not believe how nice I turned out as pictures are not my best forte!
Thank you so much for inviting me to be part of your project and I look forward to hearing how it is progressing.
Regards,
Paula (bruceysunshine)
“Because we always ‘need’, and ‘enjoy’ a sunny day”
Dear Raymond,
I saw your blog on Calumet’s email and am very moved by your photographs and interviews.
At the moment I am taking care of my husband who has dementia. He is a physiatrist (physical medicine and rehabilitation physician ) who for 50 years combined was medical director of rehabilitation at University of PA hospital and then at Christiana Health Care System in Wilmington.
It is painful for me to see a man who helped hundreds of patients throughout his career, now needing help himself. While he worked he was greatly loved and admired for his sense of humor and dedication by both staff and patients.
With all good wishes,
ADELE
Thank you so much for the opportunity to participate in the caregiver’s portrait session. It gave me and all involved a chance to share our story and to bring attention to the devastation this disease inflicts on families. Hopefully a cure will be available soon to help alleviate the suffering . I will be sending you some photos my son took of my husband Roosevelt and myself when he was first placed in a Memory care facility. He was so angry that he became violent, attacked other residents and had to be sent to the ER for evaluation and appropriate medications to calm him. The facility refused to take him back as he was deemed a threat to the other residents. Fortunately the case worker at the ER contacted the state Social Worker and with diligence and a miracle they were able to obtain placement overnight at the facility where he currently resides. The cost of caregiving takes both a financial and emotional toll on all as his entire monthly SS and pension goes to the facility. I had retired and was forced to return to work because all our savings were eventually exhausted and although he was a serviceman he was denied benefits from the VA because we made too much money.
Neal D Barnard MD linked animal fats to Alzheimer’s disease. Power Foods for the Brain is the name of his book.
Good morning I hope you take the time to watch this video. It is a CNN VIDEO by Dr. GUPTA on a small village in Weesp, the Netherlands where all of the people have a severe form of dementia. And are able to walk around freely. The village was build for people with memory loss.
http://mash.network.coull.com/activatevideo?video_provider_id=2&pid=8165&website_id=38737&width=584&height=359&embed_type=IFRAME&video_provider_url=http%3A%2F%2Fwww.youtube.com%2Fembed%2FLwiOBlyWpko&mobile=true&referrer=http%3A%2F%2Falzheimersspeaks.wordpress.com%2F2013%2F08%2F13%2Fcnns-worlds-untold-stories-dementia-village%2F
With high regards,
Raymond
Om Namah Shivaya
Thank you so much Raymond for sharing this. I never saw this but I have been
telling so many people about this place. It is fantastic place and If I had
to go into a home this would be my choice.
From Florence 3.13.2008,
Russell and I were married March 1979, bringing 3 children a piece to the union.
Traveling extensively with and without the children, was the way we kept our marriage alive.
In 1995 Hun (as called him) started exhibiting signs of confusion and irritability as well as asking question repeatedly, this type of behavior was completely out of his character.
After visited two neurologists for over a year and half, a friend suggested the University of Pennsylvania Memory and Disorder Clinic (MDC) the end 1998. MDC ordered the correct test and correctly diagnosed Frontotemporal Dementia in 1999. Once receiving this diagnosis, my world immediately changed, I was now a full-time caregiver for the forth time, this time my husband. On that beautiful summer day again I faced another “New Normal.”
A “New Normal” is a season of change in your life that usually comes unexpected and changes your life forever. Digesting my new role as caregiver gripped my soul. However, navigating information about the disease, the health care and insurance systems was very stressful. Trying to short out the questions you and your family have becomes overwhelming and the stress mounts with no end in sight.
As you adjust to the “New Normals,” that change everyday, you learn to build on the memories, while making new ones. So, loving him day by day and moment by moment helps get you through 24 hour days that seem endless.
I will always remember Russell saying I Love You, with his eyes, touch, and smile when he couldn’t speak; he knew I loved him, that’s when I knew I was doing it right.
Chris Leavitt July 10, 2013 at 5:38 pm · Reply →
Thank you Calumet for the excellent article. Please follow up as the effort continues. Let the pro photographer community know how we can help with this and other efforts.
Love seems to be a divine force, you can experience it as a caregiver,if a human being really pays attention. You can experience it listening to these caregivers when they share their inter most still moment. When I was shooting motion of Paula talking I experienced some of her love for her mother.
An Eye for Caring
Tuesday, 04 June 2013 15:18 | Written by Sheila Simmons | Print
Local photographer captures spirit of caregivers
Photo Left: Raymond W. Holman Jr. is a photographer who specializes in portraits of caregivers. Sarah J. Glover/Photographer
With any luck, the people whom Raymond W. Holman Jr. photographs will begin to see themselves again.
So consumed are they by the bathing, feeding and financial and medical needs of another, they—much like the mental condition of the person for whom they’re caring—fade.
Caregivers can “forget who they are,” Holman explains from his West Philadelphia home decorated with black-and-white and colored photographs that document his award-winning, decades-long career in photography.
In 2008, Holman embarked on “Portraits of Family Caregivers” for people with dementia—culminating with 58 portraits displayed at the African American Museum in Philadelphia. But five years later, the issue of caring still haunts, perplexes, fascinates and inspires him. So now, with support from Calumet Photographic, Holman is at work on a book and documentary film on the subject.
Seven portraits will be featured at the Alzheimer’s Foundation of America’s conference in New York on June 26. Then in July, Holman will photograph more caregivers at Calumet’s New York City location and then at its studios across the country.
“I want to capture a look at the spirits of these people,” he says. “I want this book to serve as witness to our ability to care.”
Holman posts some portraits on his blog (https://1raymondwholmansr.wordpress.com)—people who look proud, determined, sweet, nurturing, exhausted. Subject “Jacquelyn” (he uses only first names) wrote with her photo: “Many people think that taking care of my parents is an extraordinary thing. But I am an ordinary person.”
“Matt” recalled that his mother “was a great, interested conversationalist.” Now “she struggles to hold a conversation, because after a few words, she cannot remember what she was going to say. . . There are just some songs I cannot listen to when I’m with her, without crying, and that’s OK,” he wrote.
Holman carries such stories not just on his blog, but also in his head. He rattles off statistics, such as: Alzheimer’s is the sixth-leading cause of death in the United States, and 40 percent of caregivers die before their loved one.
This photographic journey began when Holman’s father couldn’t remember the way to his daughter’s house. Over the next four and a half years Holman cared for his father, hiring two caregivers for him, before his father died in 2001.
He said, “Before Daddy got sick, I was really focused on my own self. When Daddy got sick, I started focusing on Daddy. When Daddy died, I got lost.”
Then an assignment for WHYY to photograph a man suffering from frontotemporal dementia drew Holman’s interest to the man’s wife, who herself took 14 pills a day for her Type-2 diabetes and fibromyalgia and who used a pace maker.
More recently, at a Wawa store he encountered a woman who asked him to help her find her way back home. “I keep meeting people, so it seems my purpose, as far as my photography right now, is to bring about awareness about people with dementia and the people who care for them,” he said.
Related Articles:
Alzheimer’s Disease and Dementia by Raymond W. Holman Jr.
https://1raymondwholmansr.wordpress.com/
Raymond W. Holman Jr. Alzheimer’s Caregivers Project
http://raymondwholmanjralzheimerscaregivers.blogspot.com/
An article written by Shelia Simmons on my caregivers project.
CAPTURING AND PRESERVING MEMORIES: PORTRAITS OF ALZHEIMER FAMILY CAREGIVERS BY RAYMOND HOLMAN JR.
July 9, 2013 · in Articles, Calumet News, Interviews
As Wendy L. Campell, President & CEO of the Delaware Valley Chapter of the Alzheimer’s Association put it, “Calumet Photographic is in the business of capturing and preserving memories; the Alzheimer’s Association is also in the memory business.” That’s why Calumet Photographic Philadelphia is spearheading the Caregiver Project by Raymond Holman Jr., hoping that we can turn it into a nationwide project.
Calumet Photographic Philadelphia became involved in the project by donating the use of their classroom and rental equipment to use for portrait sessions, and donating a purple Nikon camera (the organization’s signature color) as an auction prize. A reporter from the Daily News sat in on the session and was so intrigued, that he stayed for three hours interviewing the caregivers for an upcoming story. Calumet’s sponsorship helped build credibility for Raymond’s project and also established a relationship with the Alzheimer’s Association.
We had the chance to speak with Raymond about how the project is going, how he has been personally affected by Alzheimer’s-dementia and how people can reserve a spot in his upcoming caregiver photography shoot at our Calumet New York location.
This is DaVeeda, who at the age of 20 became a family caregiver with her cousin Racquel who was 19 at the time. They were sole caregivers for their grandmother.
How instrumental was Calumet Philadelphia and Gregg McIlhenny in moving your project into its second phase?
Gregg was very instrumental in helping me. He quickly agreed to make the Philadelphia store available, and he contacted Calumet management regarding the use of the Manhattan location. On June 25, 2013 I captured portraits of family caregivers of people with Alzheimer’s-dementia. We ran overtime on that day, and Gregg was willing to keep the store open until we were done. I really appreciate his and Calumet Photographic’s willingness to support this project.
Moving forward with the project, what are your goals?
My intention for this project is to travel the country capturing portraits in every part of the United States, and hope to have major exhibits in museums and large galleries around the world as the project grows. I hope this will bring attention to the uniqueness of family caregivers and their willingness to help others in great need of assistance. My intention is to have a book published and produce a short motion documentary on family caregivers. I am looking for all forms of media, and financial (whether it be via grants, corporate or individual) support moving forward.
I had no idea until about a year ago of the magnitude of this disease. There is a misunderstanding that Alzheimer’s-dementia is an old-person disease, however they are discovering early symptoms in people in their late 20’s. And, there is no cure for it according to the medical field. I find that scary!
Also, when my father, “Big Ray,” was dealing with Alzheimer’s-dementia, I thought it was just about him not remembering names and faces and stuff like that. But what I have learned recently is that it can be a terrifying experience for the person affected by the different forms of Alzheimer’s-dementia.
However, my real focus is on the caregiver. This world would be really difficult without their existence. They are great warriors. Many family caregivers have died before the person they were taking care of.
This is Matt, who is his mother’s caregiver.
You will be at our New York store on Saturday, July 13 photographing caregivers. How can people sign up for sittings and what are the times that you will be photographing?
By e-mail holmanjr@voicenet.com or by calling 215-205-7414. Although I encourage walk-ins on July 13, 2013, I would like people to contact me ahead of time so I have an idea how many people I can expect. My main desire is that the families of patients with caregivers come. I believe it is very important they connect with each other and share their stories.
Aside from this project, tell us a little bit about what your normal photographic work involves.
My background is in photojournalism. It was a hobby until I started working for the Philadelphia Inquirer and the Philadelphia Daily newspapers in 1989. I shoot editorial assignments, corporate annual reports, environmental portraits and wedding photography. I have a very special interest in wedding photography because it denotes a time in two people’s lives when love is very present.
To learn more about Raymond Holman Jr.’s project or how you can become involved you can stop by his blog (www.1raymondwholmansr.wordpress.com), call @ 215-205-7414, or e-mail him at holmanjr@voicenet.com.
And, don’t miss these other great interviews on the Caregiver Project from Liberty City Press http://www.libertycitypress.net/people-article/387-an-eye-for-caring.html and this newscast from a local Philadelphia Fox News channel:
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Tags: Alzheimers, Awareness, Caregivers, New York, Philadelphia, Photo Journalism, Photography Project, Portraits
One Response
Chris Leavitt July 10, 2013 at 5:38 pm · Reply →
Thank you Calumet for the excellent article. Please follow up as the effort continues. Let the pro photographer community know how we can help with this and other efforts.
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– See more at: http://blog.calumetphoto.com/2013/07/capturing-and-preserving-memories-portraits-of-alzheimer-family-caregivers-by-raymond-holman-jr/#sthash.SwnS1wfH.dpuf
Honoring his father by honoring Alzheimer’s caregivers DN Philadelphia bases photographer Raymond Holman Jr. at his home along the 5200 block of Westminster St. near 52nd has been working on a project documenting the caregivers of family members and friends suffering from Alzheimers. His father Raymond Holman Sr. in photograph suffered from Alzheimers. This photograph was taken on Tuesday morning June 11, 2013. ( ALEJANDRO A. ALVAREZ / STAFF PHOTOGRAPHER ) GALLERY: Honoring his father by honoring Alzheimer’s caregivers » DAN GERINGER POSTED: Sunday, June 16, 2013, 3:01 AM HIS FATHER stood 6-4, weighed 250 and was respected throughout his West Philadelphia neighborhood as a strong man, so Raymond Holman Jr. was startled when his dad phoned to say that a female stranger had come into his home and robbed him. “My father’s friends called him ‘Big Ray’ and his friends were big guys,” Holman said. “Everybody in the neighborhood knew daddy. I mean everybody. So it was really a shock that someone would have the nerve to come into daddy’s house like that and steal from him.” But that shock back in 1997 was mild compared to what would follow. When Holman arrived at his father’s house on Race Street near 50th, he learned that a woman had come to the door, asking if she could have something to drink. MORE COVERAGE Residents worry elevated train track accident waiting to happen Girard students join rally against proposed cuts Big Ray went into the kitchen to get her a drink, then remembered that he’d left his wallet out on the coffee table. When he returned to the living room, the woman and the money in his wallet were gone. “I called the police,” Holman said, “and they told us it was probably a drug addict and she would probably be back because she had found a soft spot.” Holman and his father talked about not opening the door to strangers. But a few weeks later, Holman’s father phoned to say that the same woman had come back. She pushed her way in when he opened the door, wrestled him to the floor and robbed him again. “As he told me that story, I knew there was something wrong with my father,” Holman said softly. “And I knew that I couldn’t leave him by himself ever again.” Holman’s mother had died when he was young, so his father had been the mainstay of the family for decades. But now, Big Ray was experiencing the early stages of Alzheimer’s disease, a form of dementia that within three years would leave him helpless and profoundly change his son’s life. Through an aunt’s church, Holman found two women to care for his father in shifts during the week. And as Holman, a professional photographer, documented his father’s final years in black-and-white portraits, he was deeply moved by their loving care. On evenings and weekends, Holman, his brother and his sister also helped to care for Big Ray. “One day, in the last year of his life, I went over to daddy’s house to see how he was doing,” Holman said. “I never remember daddy and I touching at all as I was growing up. I needed to touch daddy. So I reached out my hand and shook his hand and said, ‘How you doing today?’ This became a habit every time I saw him. “And I never remember daddy and I saying we loved each other,” Holman said. “One day, I thought, this is stupid. I said, ‘Daddy, I love you.’ He looks up at me. He’s very surprised. These types of things were coming out of me because daddy was sick like that.” Daughters rescue dad Big Ray died in 2001. A few years later, Holman was on a WHYY-TV assignment in Wilmington, documenting Florence Collins Hardy taking care of her husband, Russell, who suffered from frontotemporal dementia, when he realized that the incredible sacrifices made by loving caregivers in the service of dementia victims was largely an untold story. He’s been telling that story in photographs and videos ever since, from a 2008 exhibit of his caregivers photographs at the African American Museum to the current photo-and-interview sessions he does with caregivers at Calumet Photographic in Pennsport, working toward a hoped-for exhibit at a Philadelphia gallery. At a recent session, sisters Patricia Holland and Lisa Salley talked about caring for their father, Franklin Bradley Salley, who suffered from Lewy body dementia for 18 years before he died in December at 74. “My dad got kicked out of five adult day-cares,” Salley said, sharing a knowing smile with her sister. “They all wanted him to sit still and look out the windows.” Salley said that after serving in the Navy, her dad was a Philadelphia police officer for 33 years and, as one of the first African-Americans on the force, spent many of those years as a civil-rights advocate within the department. So even during his dementia-driven decline, he wasn’t a man who was willing to sit and look out windows. “My dad was never a frail old man,” Holland said. “It took two people to hold him and another one to wash him,” Salley said. One day, she said, her father awoke from a post-shower nap very agitated. “He said, ‘Three little black boys attacked me! They tore my clothes off and threw hot water on me!’ ” The two sisters laughed. “Three little black boys,” Salley said. “Me and my sister and a female aide.” Although taking care of their father for years was stressful, Holland said they were guided by what he had taught them – “Do what’s right at all times” – and by what their mother, who had cared for her husband until her death, had taught them – “Do what’s in your heart to do.” “Our family history is: You take care of your loved ones,” Holland said. “You don’t get a rule book or on-the-job training. You just do it.” Salley said, “Remember the mirrors?” Holland nodded, smiling. “When dad got older and his dementia got worse, he would look in a mirror and say, ‘Who is that man? That ain’t me.’ He didn’t recognize himself. There were a lot of mirrors in his house. He was chasing himself in the mirrors all day, going, ‘That ain’t me.’ It worried him.” Salley got covers for all the mirrors that blended with the décor, so her dad never noticed the change and forgot about the mirrors. “I’m an engineer,” Salley deadpanned. “This is where it came in handy.” Love without limits Five years ago, cousins DaVeeda Clark and Racquel Braham, both 21, had just moved to Columbus, Ohio, ready to go to college, when Clark got a call from her grandmother, Mildred Munden, who had worked as a teacher’s aide for 35 years and had raised her since early childhood. “She was in tears,” Clark said. “She said, ‘I haven’t eaten in two days. I’m locked out of my house. I don’t know where I am.’ ” Clark quickly called a neighbor, who said Munden was standing in front of her own house, wearing her house keys on a chain around her neck. Clark and Braham put their education on hold and rushed home to care for Munden. They found bags of rotting broccoli all over the kitchen, canned goods in the refrigerator and shoes in the microwave. The next day, her grandmother accused Clark of stealing pennies off the dresser. “I realized we had a serious problem,” Clark said. After Munden suffered two strokes, she was unable to speak and unable to walk. For three years, Clark and Braham sacrificed sleep and their personal lives to function as a total-care tag team – feeding Munden, bathing her, dressing her, taking turns rotating her position in her bed every three hours around the clock so she wouldn’t get sores, and telling her they loved her over and over again. Clark shampooed her grandmother’s long hair, rinsed it with warm water and braided it in cornrows-all of which Munden clearly enjoyed, showing her pleasure with smiles because she no longer could speak. Once, while Munden was comatose in her hospital bed after a stroke, Clark played her grandmother’s favorite song, Whitney Houston’s “I Wanna Dance with Somebody” and was delighted when Munden started moving a foot to the music. No one in Munden’s family had graduated college so, even when the strokes and her dementia debilitated her, she fervently wanted to see her granddaughter graduate from Community College of Philadelphia with a degree in elementary education. Munden was near the end of her life when Clark burst into her room in May 2012. “When I came in with my cap and gown, and showed granny my degree, she burst into tears,” Clark said. “She passed away two months later.” It has taken Clark a while to deal emotionally with her grandmother’s death, as it has taken Holman years to deal with his father’s passing. “Sometimes family caregivers fall so deeply into the habits you develop when you’re caring for a loved one that when that person passes away, you have to figure out who you are again,” Holman said. “A psychiatrist once told me that I got lost after my father died. This caretakers project is bringing focus to my life. It just keeps me pushing forward.” Honoring his father Years after his father’s death, Holman still feels the need to help someone whom he thinks is experiencing dementia. Recently, he was parked at a convenience store in Lower Northeast Philadelphia about 5 p.m. when a woman walked over and asked him for directions to City Avenue in Bala Cynwyd. Something about the woman’s vague manner compelled Holman to offer to drive to Bala and lead her home. When they arrived at her apartment building, the woman invited him up to meet her husband. “I felt a little strange,” Holman said. “Her husband looks at me. He looks at his wife. I can see in his eyes that he’s thinking, ‘What in the world is this dude doing with my wife?’ He says to her, ‘Where have you been? You’ve been gone all day.’ “Turns out, she was on her way to a supermarket in Bala, just a few blocks away, and she got lost and ended up in the Lower Northeast.” Her husband had called the police and reported her missing. Although the police questioned Holman and the situation at the apartment was uncomfortable, he is glad that he sensed the woman’s distress and led her home. “I’m just following my conscience,” Holman said. “I’m a guy trying to pay attention to people. That’s why I’m still working on this project and probably will be for the rest of my life.” Twitter: @DanGeringer
Read more at http://www.philly.com/philly/news/20130616_Honoring_his_father_by_honoring_Alzheimer_s_caregivers.html#rcdWjkT4qbkbZ5w8.99
To whom it may concern:
it is with great pleasure that I write this letter of support for an artist for whom I have a
tremendous degree of respect. Like many of us , who are faced with the challenges of
ever- changing situations, Raymond Holman, an outstanding and conscientious
photographer, turned a major challenge in his own life into a project that inspired a
community of like-minded strangers.The common thread that united the group was that
they were all caregivers to either siblings, friends, partners or parents. in Raymond’s
case, it was his father ,who in the last few years of life suffered from the ravages of
Alzheimer’s disease and dementia, As a result of his dad’s condition, Raymond put his
professional pursuits on hold to provide his father all the love, care and kindness he
could.It was an experience that led Raymond to discover that he was not alone in his
dedication to a loved one. Being the consummate professional that he is,he turned
what seemed to some a disaster, into a most enriching experience.
In the Spring of 2008, as Curator of Exhibits, I was pleased to have the opportunity to
present “Caregivers” : Portraits and Stories,Photographs by Raymond Holman Jr.,a
collective of 53 bold portraits of proud and dynamic individuals who, like Raymond,
had stories to tell.And,that they did, as the opening reception was graced with a
majority of those from the region, who shared their emotional memories with pride.The
participants were of divergent cultures and ethnic backgrounds.From the responses to
the installation, it became evident that this was an exhibit that touched everyone.It is
as relevant today as ever. It is my opinion that the substance of such an exhibition will
have long lasting affects upon any audience in any community that views it.I speak
from truth when I say that the photography is brilliant, and the collective of the narrative
commentaries constitutes a winning combination for a memorable and impacting
exhibition.I encourage you to engage this project and Raymond Holman into your
exhibition season.Great art and good health will always lead to stimulating discussion!
Sincerely,
Richard J. Watson,Exhibitions Curator
The African American Museum in Philadelphia
Project
Dr. Goldie Byrd, lead investigator of the African Americans Alzheimer’s Disease Study and Nathan F. Simms Endowed professor of biology at North Carolina A&T, said “most of the genomic studies are still done on Europeans, on Whites.”
The planned opening of a brand-new, 3,100-square-foot building at North Carolina A&T State University later this year will mark another milestone in A&T’s role as lead research site for the first and largest study of Alzheimer’s disease among Blacks.
This state-of-the-art facility will house Dr. Goldie Byrd—lead investigator of the African Americans Alzheimer’s Disease Study and Nathan F. Simms Endowed professor of biology at A&T—and her research team and other support staff. This study aims to discover why Alzheimer’s strikes Blacks more than any other racial group in the United States. Researchers from A&T and three other colleges—the University of Miami, Vanderbilt University and Columbia University—aspire to enroll 7,000 volunteers in their groundbreaking effort. So far, 1,620 have signed up, a far cry from the few dozen Black volunteers who signed up for the study when it was housed at Duke University until moved to historically Black A&T in 2003.
Duke University has seen its share of race-based turmoil in the years following the decision by university leaders to end Duke’s all-White admissions policy in 1961. In 1968, Black students, concerned about their on-campus civil rights and non-academic worker wages, staged a takeover of Duke offices that resulted in a pay raise for Black cafeteria, grounds and other service workers, but a year-long academic probation for the protesters. Last year, Duke made headlines when Black students protested an unpublished study by Duke researchers that said Blacks were able to match the GPA of Whites over time by switching to less rigorous majors.
Such instances remain on the minds of Black North Carolinians of a certain sensibility and age that the Alzheimer’s study targets, explains Byrd.
“People remember when they couldn’t come to Duke and get good medical care,” Byrd told journalists at a health disparities conference in Washington, D.C., earlier this year. “Duke had 7,000 blood samples by 2003, but only 43 of them were from Black people.”
Byrd arrived at A&T in 2003 as chair of the Department of Biology. That same year, she completed a sabbatical at the Duke Center for Human Genetics where she and her collaborators helped initiate the Alzheimer’s study. Byrd, who is dean of the College of Arts and Sciences, hopes to identify specific genes in African-American patients with Alzheimer’s to understand why the population is more susceptible to the disease. Alzheimer’s occurs twice as often in Blacks as in Whites. The disease, which is the most common form of dementia, occurs 1.5 times more frequently in Blacks than in Latinos.
After Byrd and her team were awarded with a $1 million grant for outreach activities earlier this year, A&T ramped up outreach efforts in the Black community at locales including barbershops, churches, senior centers and so forth. That has been one way that the project, which has won citations from the Alzheimer’s Association and National Black College Hall of Fame, engendered trust. Having a lead researcher who is Black was also viewed as a real plus, Byrd says.
“In spite of the [National Institute of Health’s] Revitalization Act back in 1993 saying that you must include women and minorities in federally funded studies, most of the genomic studies are still done on Europeans, on Whites,” she explains.
“We have an opportunity here to really address the genomics in African-Americans with Alzheimer’s disease,” adds Byrd, while preparing for the opening day of “Why We Can’t Wait: Conference to Eliminate Health Disparities in Genomic Medicine,” held in San Francisco in May—she was a member of the planning committee for that conference. “We still face the fact that the knowledge gained from [most] studies is too generalized to apply to all populations. We know that, and that is critical.”
While A&T is the lead research site, Columbia and Vanderbilt universities and the University of Miami have tapped their own investigators and contributed to that pool of 1,620 study participants, 660 of which are at A&T. Participants are a mix of people with Alzheimer’s and, for health comparisons, ones without the illness.
Dr. Jennifer Manly, a neuropsychologist with Columbia University’s Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, oversees its arm of the study. She, too, is aware of lingering skepticism some Blacks harbor about participating in health-related studies. That trepidation dates back, for example, to the infamous Tuskegee syphilis experiment. For four decades, beginning in 1932, federal researchers explored the effects of syphilis on Black men in rural Tennessee, without treating them for the disease.
Manly says she strives to have a particular stance with the people who are her research subjects.
“How do we think about them and their experiences and try to make it as culturally relevant as possible?” she asks, rhetorically. “The other fact of the matter is that, although I’m African-American and live in New York, I’m not necessarily a part of their community. I’m not their age, not their cohort, so I have a lot to learn from them. And that’s the way I approach my talks in the community.”
“We need more African-American lead researchers,” Manly continues. “It’s a struggle every day for us to make sure that people understand why we are doing this research and why we need to do it among African-Americans, and when we’re doing research among African-Americans, the need to do it right.”
Besides snagging more Alzheimer’s study participants, the shift to A&T has brought the campus more attention from federal research funders and pharmaceutical giants such as Merck. Merck is underwriting some of the outreach programs, including those that will be run out of the upcoming building that will house Byrd and her team. Laboratories, a library and community rooms are in that building’s blueprint.
Research into Alzheimer’s will need to consider the bare clinical facts of the disease with its typical progression from mild forgetfulness and missed daily tasks to major mental and physical debilitation and incapacitation. But there also are the nuances, researchers say. The nuances are what they are attempting to zero in on.
“The genetic cause is going to explain a small amount of the risks [for Alzheimer’s],” says Manly. “But it is never going to explain everything. African-Americans have more cardiovascular disease, strokes, more hypertension, diabetes, which, in and of themselves, can cause cognitive dysfunction.” (Dementia, one form of cognition dysfunction, is a symptom of Alzheimer’s.)
Those extenuating health factors matter,” Manly adds. “So do life experiences and circumstances. Poverty and racism, for instance, can induce stress. Stress affects wellness. How might those overlay Alzheimer’s disease among Black people?”
Many average citizens are more aware of what’s at stake regarding the Alzheimer’s project, says Takiyah Starks, the study’s clinical research coordinator. Starks’ 88-year-old grandmother, cared for by her daughter in Chicago, was diagnosed with Alzheimer’s when she was in her 50s.
“They have embraced the project,” says Starks, referring to Blacks who support the study. “Many of them try to take it on as their own. They try to bring more people in.”
Currently there is no end date for the research. For now, it primarily targets those aged 60 and older who do and do not have Alzheimer’s. They are subjected to two to three hours of testing to measure cognitive skills and other non-invasive probing.
The research also aims to enlist younger relatives of people with Alzheimer’s who are experiencing mild cognitive decline. The study also aims to identify various biomarkers of the disease by tapping spinal fluid, for example.
“When genetic causes of the disease start to yield potential remedies for the disease, African-Americans don’t want to be behind in that curve because the burden of our community is significant,” says Manly. “We want to be out on the front end of this.”
I was thinking about Big Ray and Alzheimer’s just now. And how he once shared with me his surprise of the condition he was in. I did not understand what he meant, clearly. But at this point in my life I also am surprised. I want to complete things I started. I want to leave this life with no karma. I want to experience my at rest Soul. I do photography because I do not think during the moment of pressing the shutter button. You may wonder what this has to do with memory loss? The answer in a way, nothing. These are just thoughts I was not able to just witness.
How does a self realized person experience love?
Althought I am actively working on this project. I some moments wonder if it will help the human beings. I need to stop wondering about the results and just focus on the act of doing
I interviewed a family caregiver today. Her mother has had Alzheimer’s since 2007. She is now in the advanced stage of the disease. It sadden her to see her mother in that state. She told me she sometimes blames herself. She thinks maybe she could have prevent it from happening to her. She also worries about her own mental state.
I use to wonder why daddy never remarried. I wonder why I was never able to remarry. I thought I would. But the reality of life is I never meant anyone to marry again. Really did not come close. My birthday is coming soon I am moving closer to the moment when this body stops working. I am praying the remaining portion of my life becomes abundant again. I do not know if this is my imagination or not but the zeal for life decreases when you spend a lot of time by yourself. As a person with some years on this body. I have learned things. One of them being never ever fall in love with a stranger. Always follow your inner feeling. I never did that when it came to certain situations. Althoight this Universe was created out of love. It is not a wise decision to blindly love someone in this environment. Some people not believe in love it could come back to bite you.
I spent most of today working on my caregivers project. The opening reception is Thursday November 9, 2013. At the University of Penn. Hospital Perelman Center for Advanced Medicine. Philadelphia Pa.
I commit energy to this project because I am trying to leave something of value before I leave this planet. Universe please help me.
Headed to Teaneck NJ shortly to capture images connected to Alzheimer’s disease.
I ran into an old friend yesterday. He told me he read the article in the Philadelphia Tribune about this project. He shared with me both his mother and father developed Alzheimer’s disease. His entire family became family carrgivers. When his father died they build an addition to their home so they could care for his mother. It was an family affair.
One day when the time is right. I may start capturing portraits of people in the later stage of dementia. Maybe one reason a cure has not been found is because we only see the nicey, nicey portraits of people with Alzheimer’s and other forms of dementia. I forgot until recently who my father looked the morning he died. His skin was grey his face was drawn he was skin and bones and he was in the stage of rapid breathing. He was not pretty. That is the only image I missed I wish I had captured as he went thru Alzheimer’s disease
I had an image of a last stage Alzheimer’s person on my site. But I had to take it down because it made me feel sad. I decided for my own good I need to continue to focus on the family caregivers for having the endurance to take of their loved ones.
I was talking to a caregiver this morning. He helps someone because he feels he should. I am trying to understand that thought. Maybe I am over thinking. Maybe it is as simple as karma.
According to a book titled “Grain Brain” wheat and soya are harmful to the brain.
I all to often run across someone dealing with Alzheimer’s or some other form of dementia. Today I was telling to an older man who mentioned he dropped about two hundred pounds. To take the press of being over weight off of his knees. As a side mention he said he also has dementia, his father had dementia and his great grand father had dementia. Looking at this guy you would think he was in great shape. And that is not the case. I have made the choice to pursue this memory problem. Why I do not know but I know I have. I intend to complete this project.
As the years go on I meet more and more of my friends who have been or are family caregivers of a person with Alzheimer’s/ dementia.
Father help me with this project.
I was at a health fair this weekend. I was told in the Delaware County area there are 290,000 family caregivers of people with dementia or Alzheimer’s. I found those figures shocking. So how can I find something positive out of it? So the thought is yes there are a lot of people experiencing dementia. I am very thankful there are so many good people willing to take care of their family member
Ten years out if a cure or prevention is not found for dementia there will be a lot of walking zombie this planet.
Today around 2:00PM I spoke to a total stranger about this blog because she told me she worked at the University of Penna. Hospital. She shared that her sister’s best friend is dealing with mother’s early stage dementia. Her friend’s mother is in her early 50’s.
Later this same day I spoke to a good friend. I asked him to review this site knowing at least one of his parents died with dementia a few years ago. He shared today his mother-law now has dementia. They recently moved her from her home so she could by closer to them.
Yesterday a spoke to a family caregiver I meant in 2008. For the first time in 6 years. I asked him how the other guys he introduced me to back than were doing. I was told 3 of 5 had died in the past three years. My reaction was one of sadness. This project wears on me hard sometimes. I have had moments of wanting to give it up because of the stress I experience at times. But than I receive an email message this morning saying you are do a great job keep on it. I needed that because I do not think at times I am. Sometimes I think I am letting myself and others down. I have not achieved anywhere what I thought I would yet. I want to figure out how to take this national. How to get it sponsored. How to get it exhibited in major museum. How to get thousands of eyeball view this site. Hamsa..
I am about 80% into the layout of a limited edition sixty page 8 by 10 hard copy book on Family caregivers of people with Alzheimer’s/dementia. I will use KICKSTART to help raise the funding to design and self publish it. The first 30 people or organizations who donate a $100.00 or more will receive a signed and numbered copy.
Thanks my friend for sharing your presentation about Dementia/Alzheimer’s . Your vocation about this life altering condition is much needed and vitally insightful . I’m certain The Caregivers and Their Families are heartfelt and passionately indebted to you for your compassion and loving approach . Peace !
Thank you for this website and keeping the faith about your project. I found other’s accounts of their caregiving journey to mirror my own, for the most part, in my own experience caring for my mother who lives with me and also lives with AD. It is inspiring to read positive comments about a devastating disease and it’s ravage on those who love someone with a dementing illness. Bob DeMarco from the Alzheimer’s Reading Room is all about positive thinking while in the throes of figuring out how to best meet your family member/loved one’s needs and that blog has been very helpful to me when I’m feeling overwhelmed. Bob responds to posts and perhaps he may be a resource for your book project. Keep the faith.
Susan thank you for the comment it is worth being apart of this project. It is a good project for a great cause. I hope we are able to connect soon.
Raymond
I told myself I was taking a break from this project last year, that it was wearing me out. But I now realize I was afraid of it, I had stop doing out of Love. I was doing it, to do it. Today I realize I Love it. It is such a great opportunity to do something of value for the Human race on this planet Earth.
Can Coconut Oil Reverse Alzheimers?
January 21, 2013
Can Coconut Oil Reverse Alzheimers?
Jerome Burne
One Man’s Incredible Story
One morning last month, Vrajlal Parmar got up, washed and dressed himself, and at 10am boarded the council minibus to a nearby leisure centre. In the evening, the 67-year-old former production line worker from London took the bus home. Nothing remarkable there – except that nearly a year earlier Mr Parmar had been diagnosed as being in the late stages of Alzheimer’s.
He’d been given the standard pencil and paper test (called the Mini Mental State Examination) that doctors use to diagnose Alzheimer’s and measure how it’s progressing. A healthy person would score 30. The letter Mr Parmar’s family got back from the Cognitive Disorders Clinic at University College London stated that he was ‘too severely affected to score anything at all’. Any drug treatment would be ineffective.
What has made the difference, according to son Kal Parmar, is a teaspoon of coconut oil twice a day mixed with his food, which Mr Parmar has been taking since July.
The idea that a common vegetable oil — made from coconut meat and which you can buy in supermarkets — could make a difference seems ludicrous, yet in the U.S. there have been hundreds of similar anecdotes of dramatic improvements.
Kal Parmar first heard about coconut oil via a video on YouTube — it was about a doctor in Florida whose husband’s Alzheimer’s had improved amazingly with coconut oil.
Kal says he would probably have dismissed this as one more bit of internet hype if there hadn’t been a favourable comment about the oil from Kieran Clarke, professor of physiological biochemistry at Oxford University and head of the Cardiac Metabolism Research Group.
Switching The Brain Back On
Professor Clarke, an expert on the way the body makes and uses energy, believes coconut oil and similar compounds might help by boosting the brain’s energy supply.
Most of the time our brains rely on glucose from carbohydrates, but if that isn’t available — because we haven’t eaten anything for a while or because we’re eating almost no carbohydrates — then our brain cells can switch to using the energy from our fat stores. This energy comes in the form of small molecules called ketones.
As Professor Clarke explains: ‘Coconut oil contains a lot of a particular sort of fat that our bodies can use to make more of the ketone “brain food”. ‘It’s known as MCT (medium chain triglycerides) and it’s not found in the fats most of us eat.’
‘Alzheimers Is Like Diabetes Of The Brain’
But why should ketones help people with Alzheimer’s? One of the new ideas about the disease is that it is diabetes of the brain. Just as diabetics have problems with glucose and insulin, so Alzheimer’s sufferers can’t get enough glucose into brain cells to give them the energy they need to lay down new memories and think clearly.
If you have diabetes, you are three times more likely to develop Alzheimer’s.
As the New Scientist magazine revealed last September, there is evidence that the brains of Alzheimer’s sufferers become resistant to insulin. This is disastrous because insulin regulates the brain chemicals that are crucial for memory.
When one U.S. researcher blocked insulin supplies in the brains of laboratory animals, they developed all the plaques and tangles that are a classic mark of Alzheimer’s.
Clearing The Memory Fog
The doctor in Florida in the YouTube video is Dr Mary Newport, a paediatrician who began using coconut oil to treat her husband, Harry, four years ago. He had been suffering from early onset Alzheimer’s for eight years. She claims the results after he started taking the oil were remarkable. ‘He began to get his short-term memory back,’ says Dr Newport.
‘His depression lifted, he became more like his old self. The problem he’d had with walking improved. An MRI scan showed his brain had stopped shrinking.’
So what prompted her to use the oil in the first place?
‘Some years ago, I came across a small study suggesting that Alzheimer’s patients had a problem using glucose in the brain and that ketones could be an alternative source of fuel. The study suggested a patented drink that boosted ketone levels improved memory and thinking skills in patients with mild to moderate Alzheimer’s.’
A follow-up paper on this was published in the journal BMC Neuroscience in 2008. Dr Newport found out the patented drink contained MCT oil extracted from coconuts. ‘The patented product still wasn’t on the market, so I thought it would be worth trying coconut oil itself,’ she says.
Her accounts of Harry’s improvement, illustrated with videos on YouTube, prompted hundreds of people to share their positive experience of the oil.
One carer of a man with dementia reported: ‘His ability to speak and recall words is better, but not his ability to make good decisions.’
The carer of another man who’d had dementia for ten years said: ‘His reaction to the oil was very gradual, but his mood is so much better.’
Dr Newport recently added MCT oil to her husband’s regime because the combination gives a more steady supply of ketones, she says. While MCT supplies more ketones, most are gone from the body in three hours. Coconut oil provides fewer ketones, but they last up to eight hours.
Let us be clear, coconut oil doesn’t appear to be a cure. Furthermore, none of these accounts prove anything scientifically.They are just anecdotes and until there is a proper controlled trial against a placebo, few medical professionals will feel the case for coconut oil has been made.
The Trouble With Dementia Drugs And Why Coconut Oil May Be A Solution
These stories, however, do suggest pure coconut oil – and the MCT oil that can be extracted from it, is worth investigating.
Currently, the only type of drug available for Alzheimer’s patients, known as a cholinesterase inhibitor, works by boosting the amount of a brain chemical they are lacking.
It slows memory decline in about a third of patients for between six months and a year.
Last year, the NHS spent more than £70 million on the most widely used brand, Aricept. Its potential side-effects include nausea, diarrhoea and slow heart rhythms, which can lead to fainting.
Hundreds of millions of pounds have been spent trying to develop drugs to clear the plaques of damaged protein in the brain that are the classic sign of Alzheimer’s, but all have failed to get a licence.
So could tackling the energy supply to the brain be another option?
One expert who thinks it’s worth investigating is Professor Rudy Tanzi, director of the Genetics and Ageing Research Unit at Massachusetts General Hospital and professor of neurology at Harvard Medical School. In a recent article for the Cure Alzheimer’s Fund, he explained why coconut oil might work.
‘Virgin coconut oil contains the fats that can be converted into ketone bodies, which can serve as an alternate energy source for the brain. ‘The ketone bodies could potentially provide energy to the glucose-deprived brains of Alzheimer’s patients.’
Are There Any Drawbacks?
‘The fats (found in coconut oil) can be potentially harmful to the heart, so it would be wise to regularly monitor cholesterol and triglyceride levels if you are taking it.’
As well as coconut oil there is MCT oil, which can be bought over the counter and has been used by some athletes for years (ketones also power muscles), and the patented food supplement drink that triggered Dr Newport’s original experiment.
The more expensive patented supplement is called Axona, and has a licence from the U.S. Food and Drug Administration for use as a medical food for patients with mild to moderate Alzheimer’s who are taking a drug such as Aricept.
‘The attraction of Axona for doctors is that it provides a well-studied, pure and concentrated dose of the ketone-producing properties found in coconut oil, while eliminating the multitude of triglyceride-elevating components it can contain,’ says Dr Richard S. Isaacson, associate professor of clinical neurology at the University of Miami Miller School of Medicine.
‘The ketone-boosting approach to Alzheimer’s seems to work in about half the patients. I’d recommend coconut oil as well if there was some good trial evidence for it.’
The First Approved Coconut Trial
This evidence could soon be coming from the first coconut trial now being set up by Dave Morgan, professor of molecular pharmacology and physiology and head of the USF Health Byrd Alzheimer’s Institute in Florida.
‘I was very impressed by the anecdotal evidence gathered by Dr Newport,’ he says. ‘Patients want to know if it works and who is going to benefit, but our physicians have no scientific basis to advise them.
‘It will be a placebo-controlled trial on patients with mild to moderate Alzheimer’s. I don’t expect it to slow the progression of the disease, but it does seem to improve some of the symptoms.’
What About The Scientific Proof?
Here in the UK most experts are, perhaps understandably, sceptical of the coconut oil claims.
‘There is a huge placebo response in Alzheimer’s,’ warns Professor Robert Howard, professor of old age psychiatry and psychopathology at the South London and Maudsley NHS Foundation Trust.
‘It’s a remitting and relapsing disease, so there are often times when things seem to be getting better. It is important to protect patients from false hope and not expose them to quackery. I’m not sure there is a problem with glucose getting into brain cells but if I were to follow that line I think an existing diabetes drug like metformin would be a better bet than coconut oil. If people believe coconut oil improves symptoms it probably won’t do any harm.’
However, in some people large amounts can cause diarrhoea.
The Alzheimer’s Society, which has just had its research funding boosted by the Government, says while it ‘wouldn’t discourage anyone from taking it . . . there is not enough evidence to suggest that coconut oil or ketones have benefits for people with Alzheimer’s, so we would not consider funding research into it’.
However, David Smith, professor of pharmacology at the Physiology Institute at Oxford University and director of Optima (Oxford Project to Investigate Memory and Ageing), insists this is a mistake. ‘We have no way of knowing if coconut oil is truly effective, but given the scale of the Alzheimer’s crisis facing us, and that there’s a rational mechanism for why it could work, it’s obviously crying out for a proper trial.’
When Kal Parmar talked to a local newspaper about his father’s improvement, he received more than 150 emails asking for help. So far about a dozen people in the UK have come back to him saying they had someone in their family on coconut oil, in some cases with impressive results following Dr Newport’s reports. Recently, following Dr Newport’s example, Kal has added a teaspoon of MCT oil twice a day to his father’s regimen.
The above information was copied from the internet. Please read and make your own conclusion. Raymond W. Holman Jr. I am only attempting to share information I am not a researcher or an expert or expert in the field of brain health. Raymond W. Holman Jr.
I once sought advice about the wisdom of working on this project. I was concerned about focusing so much on it, it might affect my own health. What I have come to realize is, if I focus on the love aspect it will only be uplifting to my self and those whose become apart of it.