Feb 152013
 
goldie_byrd

During February, Black History Month, the Alzheimer’s Association sat down for a one-on-one talk with Dr. Goldie Byrd, an African-American scientist who has spent more than a decade researching the genetics of Alzheimer’s disease. Early in her career, Dr. Byrd recognized the impact of studying the nature of Alzheimer’s disease on a genomic level. Here are some of her thoughts on her observations and her motivations for continuing her research.

“I decided to focus my research on Alzheimer’s because it’s a disease of disparity, affecting some populations far more than others; its genetics aren’t well understood; and it had an impact on my family.

There’s a tremendous stigma about Alzheimer’s. People perceive it as affecting their social standing, their professional opportunities … they don’t want be associated with that kind of stigma, especially coming from a community that’s had an historical struggle to integrate.

I remember when people wouldn’t talk about cancer — it was taboo. Now people are proud to say they’re survivors. I want to create a buzz about Alzheimer’s so that people feel free to talk about it. I want more information out there and more literacy about the disease.

We need to do a better job educating people about how to care for those with Alzheimer’s — that will help with the embarrassment. And we need to provide resources to help caregivers who have an extraordinary challenge. This disease can strip a family of so many things, including their finances.

People also need to understand that the healthier we are, the healthier the brain will be. We need to increase physical activity, reduce stress, control high blood pressure and cholesterol, reduce obesity and eat a healthy diet. Often, these things are related to socioeconomics. But where we can make changes, we should. Education really is key.”

Dr. Byrd and her team were recently recognized with a $1 million grant for outreach activities. It will be used in part to support “Keeping Memories Alive” a project to bring better understanding about Alzheimer’s to all those with the disease, caregivers and policy makers.

Learn More:

 

Know the 10 warning signs of Alzheimer’s (PDF) Caregiver stress brochure (PDF)

Dec 172012
 

Kaye Fox (right) with her spouse and care partner, Lisa.

Ah, it’s that most wonderful time of the year. The store shelves are groaning gentle reader, from the weight of merchandise placed on those shelves and the skinny arms which hold them up. Stores are crowded with more racks of clothing and the people, ah yes the people, loaded down with stuff over-flowing from their carts, picking out things for those who are naughty and nice. After all it is the season for forgiveness.
 
The makeup counter is bustling with people sampling items and browsing free gift offerings. There are numbers of sales people trying their best to get you to sample all of the pretty things they have for you to buy with the offer of a free gift! People crowd around shoving and pushing trying to see the merchandise.
 
The music overhead  blares “Deck the Halls” and trees, wreaths and even a Santa or two are decked out with bright blinking lights. And the noise gentle reader, it is deafening to a point where it’s difficult to understand the words the carolers are singing as they joyfully ring their bells. Ding, Dong, Ding, Dong.
 
But wait…look over there. There is a woman with her aide, cringing in fright to the point where she looks like she is going to scream. The woman looks so terrified, so alone and confused. I go over and see if I can help. The aide holding onto her coat sleeve smiles at me when I ask if I can help. She says, “No, she will be alright.” But she sure doesn’t look alright. I glance at the woman’s wrist the aide is holding and see a bracelet that says “MedicAlert + Safe Return.”  The aide quietly whispers in my ear, “She has Alzheimer’s.”
 
I tell you all of this, gentle reader because that woman is me! I am one of over 5 million individuals in the U.S. affected by this terrible disease. When you have Alzheimer’s, or another dementia, your life can feel like a mess during the holidays. The loud noises, the ringing bells, the singing, twinkling lights and the crowds can make a person with Alzheimer’s feel all sorts of horrible, scary feelings. This stimulation has caused me to feel panic stricken, unable to move at times.

You see with dementia, things are always changing. I have good days that can last for weeks and then suddenly, I find myself in a life-squeezing terror because my partner dropped a dish and the noise triggers a panic. I freeze not knowing what to do. My heart seems as if it is going to burst out of my chest. And then it’s over. A degree of peace washes over me like water in a shower and everything is right again, but maybe only for a moment.  A child’s scream, a baby crying — those are triggers for me. I go into a stomach-griping fear, and it rises up and makes me want to scream.

My tips to make the holidays more enjoyable
The holiday season can be a stressful time for individuals living with Alzheimer’s and other dementias. Here are some things you, gentle reader can do to make this time of year more enjoyable for the person with dementia:

  • Assist the individual with dementia to set their own limits early, and be clear about them with others. Remind them that they don’t have to live up to the expectations of friends or relatives to attend holiday gatherings or participate in every social event.
  • Encourage family and friends to visit the person with dementia – even if it is difficult for them. However the number of people visiting at one time should be kept to a minimum. Perhaps try a few people visiting quietly in a separate room. Ensure that the person with dementia has adequate private time to rest between visits or as needed.
  • Be mindful of sensory stimulation such as light intensity or sound. Avoid changing light intensity; too bright or too dark. Be careful not to make sudden, loud noises that may startle the person with dementia or cause overstimulation.
  • If you are a caregiver and receive an invitation to a holiday celebration which the person with dementia cannot attend, GO YOURSELF. Enjoy the chance to be with friends and family who love you and enjoy your company.  Ask friends and family to visit with the person with dementia while you are away.

For more information about how you can support the Alzheimer’s Association to enhance care and support for those affected by Alzheimer’s disease, visit www.alz.org or call their 24/7 Helpline at 800.272.3900.

Join me and let’s make a difference together.

Learn More:

Kaye Fox is a member of the 2012 Alzheimer’s Association National Early-Stage Advisory Group. As an advisor, Kaye is interested in advocating for support groups that concentrate on living with the disease and planning for the future. More specifically, as a transsexual woman and pastor, Kaye has a special interest in developing “safe” meetings for members of the LGBTQ community dealing with Alzheimer’s disease.

Dec 032012
 

In the summer of 2011, my sister Gina and I held the distinction of having two parents in the hospital at the same time. On top of that, they were in different hospitals; one hour apart. I was drawn to our mother, and my sister was pulled to our Dad. We didn’t pressure each other. Our natural abilities paired with what each parent needed at the time.

Gina is a doctor in teacher’s clothing. She can read hospital monitors and converse with doctors as if she is their colleague.

That’s what my father needed as he suffered with lung cancer. My mother needed an emotional touchstone, while doctors ran test after test to determine whether she’d had a minor stroke and the extent of her dementia.

That would’ve been all well and good if I wasn’t also a mother of four, a wife, an adjunct professor, professional actress, small business owner, and writer who occasionally likes to sleep. (My list is no longer than most people these days.)

To be there for my Mother I had to borrow from all of those areas at a cost. When I was with her, I felt guilt for not tending to my other roles and vice versa.

This wasn’t going to be temporary, either. After her one week hospital stay, we transferred her to a nursing home with a dementia unit. She would not return to the home she’d lived in for forty-six years.

Embracing the role of caregiver

I felt responsible for my mother’s well-being, as if she were one of my children. It wasn’t until I embraced that notion that I found a way to manage the responsibility.

Attention given to mommy wasn’t “taking from” — it was “a part of” being a caretaker to my whole family. My heart was already open to taking care of Mommy. Embracing her as a dependent enabled me to open up my life and see a bigger picture.

Also, it didn’t take away from my Mother’s dignity, grace or everything she’d accomplished in her life that she needed my care. Circumstance had converted our relationship. I needed to let go of being “the child.” That label no longer applied, and I had to make a mental shift in my thinking to move forward.

I suppose I could have left my Mother’s care to the nursing home but the magnetic pull was always there.

The adoption of another dependent was the best way for me to take on my role as caregiver. A role that chose me but I was honored to play.

Learn More:

About the Blog Author Tania Richard
In addition to being a wife, mother, writer, actress and teacher, Tania Richard was a caregiver for her mother, who was diagnosed with dementia in 2011 and passed away the following year. In the short time Tania was her mother’s caregiver, she learned a great deal about the challenges caregivers face.

2013 ALTY Blog Award Nominee

Nov 062012
 

This blog is dedicated to three of our First Ladies who have led the crusade for caregivers: Hillary Clinton, Nancy Reagan and Rosalynn Carter.  All three are passionate advocates for our nation’s 65 million caregivers because they have taken the caregiving journey themselves.

Hillary Clinton – The Congressional Caregiving Champion

Photo: Numinaimages

It was a poignant moment when I read last November 1 that Hillary Clinton had lost her 92-year-old mother, Dorothy Rodham.  Poignant for two reasons:

1)    November 1 marks the beginning of National Family Caregiver Month

2)     Clinton had been a long-time advocate of the nation’s caregivers when she was a Senator from New York.  She supporting several pieces of proposed legislation that offered more services to support those family members who are providing 80 percent of the long-term care to keep a loved one living at home as long as possible. 

Her mother’s illness, a topic that was kept private from the invasive world of 24/7 news media, made Clinton one of those caregivers she had championed so often in Congress.  In an interview from Clinton’s campaign days for the Democratic presidential nomination, she credited her mother with giving her the tools — and toughness — to enter politics.  In the end, her mother had also given her daughter the tools to be a compassionate caregiver.


Photo: Richard Guinon/Dreamstime

Nancy Reagan – The Loving, Long Good-bye to a Spouse with Alzheimer’s

Nancy and Ronald Reagan’s touching affection for each other was evident in the letter former President Reagan wrote to tell the world he was suffering from Alzheimer’s disease.  In this letter, President Reagan not only helped shine his celebrity spotlight on a disease which many Americans did not understand, but he also highlighted the concern he had for Nancy who would be caring for him.  He understood the difficult emotional toll it would take on his wife.

 

As the caregivers of today’s more than 5 million Americans diagnosed with Alzheimer’s disease know, Nancy lived the last 10 years of her husband’s life known to dementia caregivers as “the long good-bye.” While Nancy had the resources to care for her husband in ways most Americans do not, the emotional toll it took on her cannot be ignored.  

What was perhaps most heartwarming was that the strained relationship Nancy had with her stepchildren and with her own son and daughter actually improved over the course of President Reagan’s disease diagnosis and decline.  Family dynamics are sometimes difficult to navigate during caregiving and can lead to added stress and strife.  But, in this instance, it brought a family closer together which is one of the gifts that can come from caregiving.

Since President Reagan’s passing, Nancy has become a passionate advocate for Alzheimer’s disease awareness and education and especially advocating for the research around embryonic stem cells that can hopefully lead to a cure.  She also speaks about her personal caregiving journey and the need to recognize caregivers as a crucial part of the “care team” around a loved one.

Rosalynn Carter – Caring for Parents On Both Ends of Her Life

Photo: Wayne Perkins/The Carter Center

Long recognized as one of the pioneers of the caregiving movement, Rosalynn Carter is known for her famous description of the life event of caregiving in America:

You have been a caregiver

You are a caregiver

You will be a caregiver

Or someone will be caring for you

 In her book, Helping Yourself Help Others – A Book for Caregivers, former First Lady Rosalynn Carter writes, “We can learn to approach caregiving as a blessing as well as a challenging task.” 

She knows of what she speaks firsthand:  Rosalynn was only 12-years-old when her father was diagnosed with terminal leukemia.  As the eldest daughter, she helped care for her ailing father and supported her mother by also caring for her younger siblings.  She took up caregiving again for several relatives with cancer after she left the White House and most recently was caregiver for her mother who died in 2000 at age 94.

Rosalynn’s gift to caregivers comes from a lifetime of understanding the challenges — emotional, physical and financial — that accompany caring for a loved one.  A long-time devoted and determined advocate for those Americans with mental health issues, Rosalynn Carter is also behind the founding of the Rosalynn Carter Institute (RCI) for Caregiving at Georgia Southwestern State University in Americus, Georgia.

While women may be seen as “the power behind the throne,” these First Ladies are proof that women also put the heart into caregiving.

 Learn More:

About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

Oct 292012
 

I always say, if you’ve met one person with Alzheimer’s—then you’ve met one person with Alzheimer’s. Many people don’t realize how each individual has a unique experience with the disease—unique symptoms, a unique path to diagnosis and unique needs.

November is National Alzheimer’s Disease Awareness Month and National Family Caregiver Month, and as a member of the Alzheimer’s Association National Early-Stage Advisory Group, I’m proud to share my story to help raise awareness of disease and those affected.

A year ago, at age 62, I was working as a third-grade teacher when I noticed I was having problems with balance and gait. As a two-time breast cancer survivor, I went to see my doctor, who suspected the cancer had returned and spread to my brain. You can imagine my shock and devastation when a series of tests revealed I had Alzheimer’s disease.

It took me a long time to come to terms with the diagnosis, but I found solace and support in the Alzheimer’s Association. I decided that while I was still able, I had to “Get real” with the details of my diagnosis and start planning for the future.

Although I retired from teaching, my background in education has been a great benefit in my journey with Alzheimer’s. In my previous job as a principal, I adopted the habit of taking copious notes, writing down conversations I had with parents, students and teachers. Now, I use that same practice to stay on top of my day-to-day activities. I write down everything in a notebook I carry with me: what I did, who I saw, what I said, the names of doctors and books I want to read. I stay active in the field of education by tutoring and working at after-school programs.

My life with Alzheimer’s is somewhat unique because I live alone. To keep myself safe, I have routines—I have a specific place where I keep my keys and I have a process to make sure the stove is turned off every night. Right now, I am still in the early stage of the disease, and very independent.

I’m grateful for the opportunity I have to plan for the future. I know there will come a day when I can no longer care for myself or manage my own finances. My brother-in-law has power of attorney, and I’ve started to visit long-term care facilities in my area.

I’m fortunate to have found a steady source of support in my friend Jean. We taught together for a couple of years before my diagnosis, but I don’t know what I’d do without her now.  She keeps me social by inviting me to everything—and I mean everything! We read books and go to the movies together and discuss them. She sends me notes about things I might find interesting—just this morning, she emailed and told me to read the opinion column on the stimulus plan in our newspaper.  She makes me homemade chicken rice soup and chili. We have tickets to see “Jersey Boys” together later this month. 

In short, she is a beautiful person, inside and out. She nurtures my soul.

This November, I’m thinking of all of those facing Alzheimer’s, going through their own unique experiences with the disease—and of the many caregivers whose love and support is the most valuable gift of all. 

Learn More:

Janice Pfeilschifter lives in Aberdeen, North Carolina and is a member of the 2012 Alzheimer’s Association National Early-Stage Advisory Group. As an advisor, she hopes to share the perspective that life does not end with a diagnosis of Alzheimer’s disease.

Oct 192012
 

Choice is a luxury and usually a gift.  As a caregiver to a loved one, the absence of choice is a difficult concept to grasp when you are accustomed to the illusion of choice and control in your life. It is earth- shaking to have circumstance thrust upon you, pushing you towards decisions that may go against your grain. - Tania Richard

My mother was diagnosed with dementia in the summer of 2011.  At the time, my youngest kids were three and one. My blended family includes my husband, four kids and a large sheepdog living in a three bedroom townhouse. There was no room for my Mother to live with us comfortably, and no funds to pay for a 24-hour caregiver, which she needed because she could not be left alone.

My parents didn’t plan for their retirement. Their choice determined that I had few options when it came to choosing where my mother would live. The nursing home with a dementia unit I chose would have to be one covered by Medicaid.

She would be fed, clothed and housed with no adornment or extra amenities. My Mother, a private woman, would share a room with two other people.

I could choose to wreck myself over the fact that my Mother was living there, or I could choose to accept it and focus on the fact that she was safe and physically sound.

I had to remind myself that my Mother had not been living a quality life for the past year as her home fell into disrepair and her hygiene declined. The nursing home would be an improvement. I would have to tell myself that every time I visited her.

She was happy in her new environment and made new friends. My Mother before her diagnosis would never have been happy in the nursing home. My Mother with dementia was quite content.

Finally, I felt as if I could make a choice that would empower me and the Serenity Prayer was a guiding force:

            God, grant me the serenity to accept the things I cannot change,
           Courage to change the things I can,
          
And wisdom to know the difference.

 These are wise words for caregivers to live by as they navigate the world for the person in their charge.

Learn More:

About the Blog Author Tania Richard
In addition to being a wife, mother, writer, actress and teacher, Tania Richard was a caregiver for her mother, who was diagnosed with dementia in 2011 and passed away the following year. In the short time Tania was her mother’s caregiver, she learned a great deal about the challenges caregivers face.

Oct 152012
 

My favorite cartoonist, the late Charles Schulz of Peanuts fame, wrote that, “Happiness is a warm puppy.” I wonder if he knew that happiness is just the start when it comes to enhancing the lives of older loved ones in nursing homes or assisted living, terminal patients such as those suffering from AIDS, children with special needs and even caregivers looking to improve their own health. Known as Animal-Assisted Therapy (AAT), there is a growing movement to increase animal/patient interactions for health and wellness benefits.

The notion of pet therapy all began in the 1860s although most of the studies were conducted in the 1980s. While the medical community is still waiting for scientific data that shows pet therapy can have long-term or behavioral change benefits, even famous nurse Florence Nightingale recognized that animals provided a level of social support in the institutional care of the mentally ill over 150 years ago. In an effort to prove the therapeutic benefits of pet therapy, the National Institutes of Health has funded grants to study scientific evidence-based research in therapeutic effects on children.

You may have read about the dogs that can smell cancer in their owner long before a formal diagnosis is made, help calm children who have an epileptic seizure or even bring people out of comas. One story from Pet Partners (formerly known as the Delta Society) is that they were called to visit a terminally ill patient. When the handler arrived with her cat, the patient had slipped into a coma. As the handler put the cat into the bed, the patient suddenly awoke, removed his arms from under the sheets and started to pet the cat. I truly believe animals have special healing powers and a sixth sense. To back up my notion, I read that Dr. Edward Creagan of the Mayo Clinic Medical School observed, “If pet ownership was a medication, it would be patented tomorrow.”

While dogs, cats and rabbits are most commonly used with older patients, dolphins and horses have also proved effective with children with mental health issues, epilepsy, physical disabilities or autism. The biggest benefits of cozying up to a “warm puppy” are:

Socialization
Older loved ones often feel isolated whether living alone at home or in a facility such as a nursing home or assisted living. In fact, Human-Animal Interactions published a study of elderly dog owners revealing 75 percent of men and 67 percent of women considered their dog their only friend. Some studies have found that just a few minutes a day petting or visiting with an animal lowers the stress hormone of cortisol and increases the feel-good hormone of serotonin. The results can range from lowered heart rates and blood pressure to decreased depression. For older loved ones still living at home, if they can manage the daily needs of a pet (feeding, walking), some surveys have found that the interaction and companionship of a pet can improve your loved one’s health through increased physical activity and even lower pain levels in some arthritis patients.

Emotional
Depression in older patients can be common, especially if they recently lost a spouse, received a terminal diagnosis or had to move from the comforts of home. Pet therapy or even a new pet can provide unconditional love, comfort and helps reduce anxiety, particularly noted in nursing home patients.

Many assisted living facilities now have a Pet Care Coordinator to help seniors care for their own pet. If an owner forgets to feed the pet or it becomes too difficult to walk them frequently, the Pet Care Coordinator can help keep pets up-to-date on veterinary visits, grooming and vaccinations. Silverado Senior Living, which includes memory care facilities for Alzheimer’s and dementia care residents, encourages pets in the facility – both privately owned pets and visits from pet therapy organizations. Pet therapy for those with Alzheimer’s or dementia has also proven to be a powerful tool for what is known as “sundowners,” the evening periods where patients become agitated or confused.

Animals have even proven to be valuable members of the hospice team for a terminally ill loved one. There is a famous cat in Providence, Rhode Island known as Oscar who is one of the critical members of the hospice team in the local nursing home. Patients and family members have reported that when Oscar would enter the room, there was a sense of calm—even though Oscar was known by residents as visiting a room when someone was dying. As opposed to a bad omen, Oscar brought comfort and peace to both the patient and their family members. Oscar stays with the patient, sitting quietly in their lap or on their bed where he remains until the loved one has passed.

For children with autism, pets can improve their communication skills, which can often be stressful. Because animals are non-judgmental, special needs kids relax and are able to absorb other benefits during their pet therapy sessions. Animals’ nonverbal communication and profound acceptance can be soothing for those with difficulty using language. Hippotherapy, which is therapeutic horseback riding, is practiced in 24 countries and benefits those with physical, psychological, cognitive, social, and behavioral problems. In fact, the American Speech and Hearing Association now recognize hippotherapy as a treatment method for individuals with speech disorders. While some benefit from the connection and the relationship built with the horse, other riders benefit physically from the movements that help build core strength, body awareness and muscle memory.

Pets can also benefit the caregivers. Caregiving can make you feel like you are all alone. While adding a pet to the list of loved ones you have to care for may seem like overload, having that happy face and wagging tail ready to give you some unconditional love when you return home can benefit caregivers as well. Studies have found that caregivers are twice as likely as the general public to develop chronic illness due to the prolonged stress of caring for a loved one. If having a pet can increase your exercise, lower your blood pressure and bring a smile to your face – maybe finding a Lassie, swimming with Flipper, holding Thumper or riding Mr. Ed is just what the doctor has ordered.

Pet therapy organizations
Following are organizations where you can find pet therapy handlers/animals or participate in caregiving pet events:

Pet Partners (formerly Delta Society) Therapy Animal Program trains and screens volunteers with their pets so they can visit patients/clients in hospitals, nursing homes, hospice and physical therapy centers, schools, libraries and many other facilities. The Pet Partners Service Animal Program provides information and resources for people with disabilities, as well as their friends and family, who are considering getting a service animal or who are currently partnered with a service animal.

Pets for the Elderly Foundation matches seniors with cats and dogs by underwriting the pets’ adoptions.

Therapy Dogs Inc. is a national registrar with a listing of more than 12,000 handler/dog teams in U.S. and Canada. The organization provides registration, support and insurance for volunteers who want to provide pet therapy services.

Numerous organizations in local communities, including Pet Therapy, a non-profit organization in Southwest Florida, bring pets into nursing homes for weekly visits with puppies and dogs brought by adult and even child volunteers.

Learn More:

About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

Sep 052012
 
K_Murray_headshot

I was diagnosed with younger-onset Alzheimer’s disease in 2009 at the age of 56. Prior to my diagnosis, I was the senior vice president of operations for M&T Bank, overseeing hundreds of employees across the Maryland and Delaware regions.

I still run into those people — former employees or co-workers — at the grocery store or out at restaurants. I remember faces, but not always their names. Often, I notice that people make eye contact with me and then turn around the corner rather than say hello. Maybe they are just uncomfortable. Maybe they don’t know what to say.

There are times when my husband, Robert, and I are out and friends will ask him, “How is Kathy doing?” He will say to the person “Let’s go talk with her.” Most individuals don’t know what to say and it may be easier for them to avoid me.

I want people to know the truth about Alzheimer’s disease. That it’s not a mental disorder or “just a little memory loss.” It’s the most common form of dementia. And it’s a progressive disease.

I speak up and tell people about my diagnosis and take as much time as I need to educate them. I want them to have a better understanding of Alzheimer’s. I want them to know there is much more to the disease than the late stage. Someone with Alzheimer’s doesn’t have to be in a wheelchair or lying in a hospital bed; they can be like me, still able to travel and live life to the fullest. Maybe they are not at the top of their game, but they have found ways to adapt. Like me, someone with Alzheimer’s can still be functional and independent. I still have so much to contribute.

It’s not always easy to speak up about Alzheimer’s. Even now, several years after my diagnosis, it can be very difficult for me. 

Last week was Robert’s birthday. He received a card from friends that read something like, “At your age, we knew you wouldn’t remember we sent the same card last year!” Robert and I just sat and looked at each other.

Kathy Murray is living with Alzheimer's disease.This isn’t an issue about a level of education or intelligence. We’re fighting against popular culture. This is about awareness and education around this particular disease.

Keep talking openly about Alzheimer’s, and little by little, it will get easier. Sometimes you have to put yourself out there, and that’s not easy for everyone. Make sure your friends and family members are educated about the disease. They can speak up on your behalf, too.

Learn More:

About the Blog Author: Kathy Murray is an alumna of the national Alzheimer’s Association Early-Stage Advisory Group (2011). She lives in Frankford, Del., with her husband, Robert. Kathy and Robert have two sons, Robbie and Bryan, and six grandchildren.

Mar 272012
 

But she does a pretty good job of making me feel like she does. I believe she knows there is a connection. She keeps it very simple when she talks to me. Partly I think because she knows that she can’t quite remember but is still witty enough to know that she doesn’t want to make it any more confusing than it already is for her.

I think she is past the most scary part— realizing she is “losing her mind.” She knew something was happening. And at first I thought it was just my mom being dramatic. But looking back a few years, her behavior was strange. And soon it was clear that she was slipping away. That mostly showed up in her feeling scared and not wanting to be alone.

I remember in the fall of 2008, she said something very profound and sadly poetic. She said, “me and the night don’t get along.” I thought that was quite a lyric. My mother was as witty as they come. She wrote tons of poems and parodies of songs. Mostly for co-workers leaving for another job or for cast-mates at the end of a show she was in. Or for my sisters’ bosses or workmates. She would whip something up in an evening. She could do it all. Of course she had and raised nine kids — that says it all.

I don’t want to keep saying WAS because she still IS. She still has her one-liners. She is still sweet and very interested in what you are saying.

When I saw her last December at my sister Carol’s Christmas show at the fabled Footlight Club, she was so into the show. I enjoyed watching her as much as the show. If you didn’t know she had Alzheimer’s, you wouldn’t think it. She was very in the moment — happy to see my father introduce my sister, but also zinging him saying to herself, “he’s awful.” She watched each song— liking some and loving others. But then a few minutes after, I asked if she liked the show, and she answered, “what show, dear?” That kind of sums up where she is right now.

I am no expert and I am 3,000 miles away, but she is doing ok for someone at her stage of this disease. My mother was a force and could do so many things. Now, she is very slow. But through all this there is a bitter sweetness. I hear stories from my siblings about how sweet she is and the simple loving words she says to them. There is still a person in there. And she is alive and still working it out.

I think she still knows that she has some kind of disease, but she has moments of peace. Hopefully, with more funding and the hard work of all involved, we can find a cure so that Alzheimer’s will not affect generations to come. This disease affects the whole family. My mother is so fortunate to have the care she has, but so many are not as lucky.

I will be running the Hollywood Half Marathon on April 7, 2012, in her honor — and in honor of all those affected by Alzheimer’s — and to raise awareness and funds for the Alzheimer’s Association. If you can, please donate to my page at http://www.crowdrise.com/JoeyMcIntyre

Thank you for always supporting me in anyway you can— in your thoughts and prayers and deeds.

Joey McIntyre is a singer/songwriter who rose to fame as a member of New Kids on the Block selling over 80 million albums and countless sold-out shows worldwide. He continues to push boundaries with his music as a solo artist and has vast theatre and screen experience including appearing in Wicked on Broadway and as a season regular on Boston Public. Recently, Joey declared himself an Alzheimer’s Association Champion and is fighting to end Alzheimer’s on behalf of his mother who is living with the disease. 

Feb 242012
 

When Glen Campbell took the stage at the Grammy Awards and accepted his Lifetime Achievement Award, he did so as one of the more than 5 million Americans diagnosed with Alzheimer’s disease.  What is inspiring about the 75-year-old Campbell’s Grammy night appearance is that he has not retired from his love of making music despite his recent diagnosis.  In fact, he is starting his Farewell Tour and is cutting a new album.

Is music one of the keys to a longer, happier life – despite your health issues?

The news about Campbell got me thinking about studies and articles I have read about music therapy.  Although music has been with us since the dawn of time, in the last few decades studies have found that music as a therapeutic tool can increase cognitive function in Alzheimer’s patients, help premature infants gain weight, encourage autistic children to communicate, lead stroke patients to regain speech and mobility, control pain for dental, surgical and orthopedic patients, and manage anxiety and depression for psychiatric patients.

Dr. Oliver Sacks, a renowned neurologist and psychologist at Columbia University Medical Center best known for his 1973 book Awakenings, which became an Academy Award-nominated film starring Robin Williams and Robert De Niro, and who also wrote Musicophilia: Tales of Music and the Brain, testified at the Hearing before the Senate Special Committee on Aging entitled, “Forever Young: Music and Aging,” and issued this statement:

“The power of music is very remarkable… One sees Parkinsonian patients unable to walk, but able to dance perfectly well or patients almost unable to talk, who are able to sing perfectly well… I think that music therapy and music therapists are crucial and indispensable in institutions for elderly people and among neurologically disabled patients.”

The Magic Brain Workout Is Music

Since music is associated with one of the five senses — hearing — which is controlled by the brain it makes sense that we should exercise our brains with music listening to spur cognitive function in the same way we use physical therapy to exercise our limbs, muscles and joints to regain mobility and physical function.

When it comes to Alzheimer’s patients, studies have shown that music reduces agitation or improves behavioral issues such as violent outbursts.  In one pilot program, 45 patients with mid- to late-stage dementia had one hour of personalized music therapy, three times a week, for 10 months, and improved their scores on a cognitive-function test by 50 percent on average. One patient in the study recognized his wife for the first time in months.  Another music therapy study showed that stroke victims can learn to walk and use their hands again.

And, music therapy is not just used with older patients.  When it comes to those children diagnosed on the autism spectrum, music therapy allows these children to develop identification and appropriate expression of their emotions — music becomes the universal language.  Many people with diagnoses on the autism spectrum have innate musical talents so music therapy can give these kids a sense of accomplishment and success.

When I spoke to Holly Robinson Peete, the successful actress, talk show host and singer, about her son R.J. who was diagnosed at age 4 with autism, she said he loves music and he has even recorded a song.  In fact, Holly finds music a great way for her entire family to connect with R.J. and to enter his world.

She told me, “I think music makes him more comfortable — it is a way for R.J. to communicate without being judged.”

Music — Cure for Caregiver Complaints, Too

Music as therapy is not just for your loved one.  We know that caregivers encounter increased stress over caring for a loved one.  Since studies show that listening to music can lead to increased secretion levels of melatonin, a hormone associated with mood regulation, lower aggression, reduced depression and enhanced sleep.  Using music to cope with these common caregiver complaints can be a welcome relief to caregiver burn-out.

How to Use Music in Your Caregiving Plan

Although the 2008 documentary Young @ Heart, showcased a chorus of 80-year-olds singing Beatles, Rolling Stones and Sonic Youth cover songs, most experts agree that with an older loved one it is best to choose music that reminds them of an earlier, happier time in their lives.

  1. Discover the “happy times tunes”:  Talking to your loved one about happy times in their life and understanding the music associations with that time are essential.  Whether it is big band, gospel, rock ‘n’ roll, country, opera or blues, find out what made your loved one happiest.  Most older loved ones, especially Alzheimer’s patients who retain long-term memory as opposed to short-term memory, find tunes from their youth the most joyful but be careful.  Music can also evoke sad memories.  One Holocaust survivor in a pilot program reportedly became very upset upon hearing a Wagner opera which reminded him of that era of his life.
  2. Engage younger generations:  You can help create emotional intimacy when spouses and families share creative music experiences.  Whether it is downloading songs from iTunes, creating a Pandora play list or using the latest technical creation for digital music files, engage your kids in interacting with their grandparent or sibling with special needs to choose their favorite music.
  3. Pick the right setting:  It may not be as simple as turning on a radio.  The radio can be distracting with constant advertising that breaks the peace of music.  Instead, try internet radio like Pandora channels, or use an iPod or CD player.  And, be careful with headphones — some may take comfort in the privacy of headphones while others will become irritated or uncomfortable.   Also, consider live music situations carefully.  For author Gail Sheehy, being able to take her husband, who was suffering from cancer, to a last jazz night out on the town was a gift she will always treasure.  But, for special needs children and some older adults — the unsettling activity of a live concert or band can be frightening.
  4. Let your music play:  As a caregiver music is your therapy as well. Whether it is creating your own playlist to lift your mood when you have a “down day” or just taking pleasure in watching your loved one become engaged, music can make your heart soar.  Celia Pomerantz, author of A Mother’s Daughter’s Journey,  found that her mother, who grew up in Puerto Rico, loved a certain era of salsa music such as Tito Puente.  She created song lists of her mom’s favorite tunes while her mother was in the nursing home.  Celia became enchanted as her mother blossomed into the woman residents called “the dancing queen.”  The joy of music and watching her mother dance lifted Celia’s spirits about her mother’s Alzheimer’s diagnosis.
  5. Find a professional music therapist:  The American Music Therapy Association (AMTA), a non-profit organization that represents over 5,000 music therapists, corporate members and related associations worldwide offers information about music therapy studies and a listing of credentialed music therapists that offer services in institutional, residential and private home settings.

 Music can both evoke and create memories that last forever.  I close with this heartwarming story from the AMTA website:

When a couple danced together for the first time after five years of the husband’s deterioration from probable Alzheimer’s disease, the wife said: “Thank you for helping us dance. It’s the first time in three years that my husband held me in his arms.” Tearfully, she said that she had missed him just holding her and that music therapy had made that possible.

©2012 Sherri Snelling

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About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.


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