Stories and Tips
A special thanks to everyone who has taken time to share their stories, tips and thoughts. Your insights are invaluable to others in the BrightFocus community.
Kathleen from Las Vegas
My husband just died in October of this year of Alzheimer's disease. I thought I knew what was next, because I also took care of my father with Alzheimer's disease. This disease is different for each person it affects. My father could care on a conversation, but didn't know he was talking to his family. My husband totally disappeared. He quit talking, he quit walking then finally quit eating. This is a debilitating disease not only on the patient, but the family. I understand now why they call it the "long death".
Jacqueline from Connecticut
My husband had Alzheimer's for over 10 years. I had him home for over 5 years until it became too difficult for me. It’s hard when you try to do it yourself, and I waited before having him placed in an Alzheimer's specialty home. I found using my early childhood education when dealing with him was very useful. I would always treat him at the age he seemed to be acting. We would color, play with dough, make cookies. When he hallucinated, I went along with him telling him that guests could not stay for dinner since I did not have enough food, but will invite them to come back. When he wanted to visit his sick mother (deceased) I would have someone call and pretend it was his sister and tell him "mom's better and is going out" but she wanted him to know so he could come tomorrow if he wanted. Tomorrow would come and he would not remember. Try to keep a sense of humor. When he gave dogs a napkin and spoon along with their food and opened cans of coke, I did not make fun of him; when he was not looking I would take it away and he never noticed. Try to help them keep their dignity please. I did that all through his illness until his passing. I feel that was my greatest gift to him. DIGNITY! It’s something patients often lose, now they can't even wipe their noses, go to bathroom on their own etc. Give them dignity. Dress them as they liked, comb their hair as they liked, speak gently, and be sure to touch and hug them. Touch is so important. It feels good no matter what. I hope this helps someone caring for a loved one.
Agelia from California
My husband has early signs of Alzheimer's disease, but he is still able to do many tasks that he loves to do. I do not take these activities from him because he still feels he is needed. He still reads a lot of his favorite news reports on politics and biographies of Presidents. He loves a small patch of garden with a few fruit trees. He still wants to sit with his close friends in parties and in church. He is able to articulate what he needs. When he forgets, he asks with a clear sign of his hands when he forgets the name of the object. We need to ask what is important to the Alzheimer's patient. They are still able to perform skills they used to do with much encouragement and appreciation even if they are done with some errors.
Bettie from Florida
My husband was diagnosed with Alzheimer's in 2005. For two years prior he had signs but refused to see a doctor. New challenges every day are exhausting and very frustrating. I feel guilty because I can't seem to put the effort into my role as a caregiver. The word "calm" does not exist in my life. I can't sleep, or think.
Maria from California
My mom always tells me stories about my grandma, Carolina, and about how strong she used to be. When I say ''used to be'' I mean before this destructive disease called Alzheimer’s reached her. When I hear of people with Alzheimer’s, I always remember those times when my grandma was suffering and I just think about what a bad time those people must be having. I wish there was a remedy or solution to end this because people don't deserve this.
Trust me. In my opinion, this is one of the worst diseases I've ever heard about because you can live so many years and each year you lose your memory a little bit more. I don't know if I would be able to stand another case like this in my family. I wish my grandma would be still with us, but at the same time, I'm pretty sure that she's in a better place and she's resting in paradise after all those years of suffering. In the future I wish I could help in some way people with this disease. It would be a way for me to honor my grandma.
Tammy from California
My father has Alzheimer's disease, and we as a family gathered together to honor his wishes to never be put in an assisted living facility or nursing home. By the grace of the Almighty Living God, my four kids and myself have been managing to honor his request since 2002. Dad no longer talks or walks. We feed him, bathe him, clothe him, and ALWAYS have him amongst us throughout the day so that he is integrated with the family and surrounded by love. He still has a few moments of clarity and recognition, and we cherish them deeply. All my children are young adults, three are married with children, and one is a senior in high school. We schedule times to be with dad when the ones who are provided with an employment check are finished with their shifts, and to cover weekends and holidays. It has worked out well for us but I believe that the only reason for our success is due to a deep rooted conviction to honor his wishes. We will keep him amongst family until he takes his last breath.
How to Cope With Caregiver Anxiety
Rivera works with Alzheimer's caregivers, talking to them about anxiety and depression. He provides helpful tips for caregivers at www.calmclinic.com.
While the purpose of caregiving is to tend to someone in need, being an effective caregiver requires that you also focus on yourself. For you to be at your best as you take care of someone, you must make sure that the activities of caregiving don't diminish your own mental and physical well-being.
Being a caregiver can require great personal sacrifice. You expend time, emotion, mental effort, and physical energy to help your patient cope with the effects of illness and get through the day. Caregiving can take a powerful toll, especially when you are giving care to someone with a disease like Alzheimer's, in which the patient may not only not be grateful, but may be angry with you. Some potential causes of caregiver anxiety include:
- Fear—Alzheimer's is a terrifying disease, and watching someone suffer through it can cause you to reflect on your own fears of aging or of developing the disease. You may also fear for the future, both the patient’s and your own.
- Frustration—It can also be frustrating as you try to help someone cope who is suffering from problems for which you may have little or no help to offer. Frustration is a surprisingly powerful emotion, potentially leading to guilt or resentment.
- Anger—Anger is often a reaction to fear and frustration, and it can be a response to the verbal or mental abuse some caregivers receive at the hands of their patient. Resisting anger may require new levels of discipline or outside support.
- Doubt—No one is 100% equipped to deal with Alzheimer's, no matter how much training he or she has had. You may doubt your effectiveness as caregiver, leading to more stress.
It's no wonder, then, that so many caregivers suffer from anxiety and stress issue, but it doesn’t help your patient if you risk your own happiness and well-being. If you're taking too little time during the day to pay attention to your own needs, there are steps you can take.
Taking Care of Yourself
Paying attention to your own health is essential to your role as caregiver. Your ability to care for someone is going to be impaired if you're stressed or anxious. Take positive steps to maintain good mental health for yourself.
Some ideas include:
- Support Groups
Meeting other people who are caring for loved ones and talking about your experiences, fears, and other emotions can be quite valuable. Consider finding or creating a caregiver support group, and spend time sharing and listening to personal stories. Learn new coping skills from others’ experiences.
Never be afraid to see someone about your anxiety issues. There are counseling services and mental health professionals who provide help to those who experience stress from caregiving. It is in your best interest and your patient’s for you to seek this support when you need it.
- Remaining Active
Caregiving may involve some physical effort, but it is sporadic and does not offer cardiovascular benefits. Since regular exercise is essential for maintaining good mental and physical health, and it is just as critical to spend time with friends, consider combining those two needs by being physically active with people you care about.
You can find tips and strategies for reducing anxiety and maintaining your health on the Internet, at the library, and in support groups. Visit www.brightfocus.org/ADRresources to learn more. It’s important to set aside time to focus on your own needs, and this will make you a better caregiver.
Rick Roman from Ohio and Jeana Pothoff from Nebraska
Songwriters Create Music Video to Honor Alzheimer's Disease Caregivers.
Richard Roman is a songwriter and playwright from Ohio. Most of the songs he writes are inspirational. In 2010, Rick began working with Jeana Potthoff, a Nebraskan wife and mother to a 12-year-old girl. Jeana teaches piano and violin lessons and composes music. Together, Rick and Jeana write songs with powerful messages to help the causes they care about. Their most recent work is a music video titled “Hiding from the Rain.” It tells a story about how love can endure, even when faced with losing someone to Alzheimer’s disease
Both Rick and Jeana have witnessed first-hand the devastation that memory loss from dementia can cause to those who have it and their families.
Pamela S. K. Glasner from Connecticut
Last Will and Embezzlement—a Documentary, and a Last-Ditch Bid for Justice
On May 2nd 2011, just hours after my 89-year-old mother was buried, a stranger sat across a table from me, leaning back in his chair and, in a comfortable Florida drawl, informed me that he'd gotten his name added to my mother's checking account. Before my brain had time to digest that, he added that he was the newly-designated executor of my mother's estate, that he was going to sell her house and put the proceeds of that sale into the checking account which, he pointed out with a certain amount of satisfaction, was solely his now that my mother was dead. And then, with a smile that could have frozen the blood of the devil himself, he said, "...and there's nothing you can do to stop me because I have more money than you and I can keep you tied up in court forever."
Whatever it is you're feeling after reading the previous paragraph, you can multiply it a hundredfold and still you'll never come close to “getting it” unless you've been there.
We are a strange brotherhood, the families of those who have been exploited. Regardless of where we come from, what we look like, how much we make, or what our politics are, we all get to sit there in utter bewilderment and dismay as we come up against brick wall after brick wall, even when the guilt of the perpetrator is so crystal clear that a 5-year-old could see it. We share our stories with each other, each one more horrific than the last; we rant, we cry, we write letters and we wonder just how a society that is purportedly built on the premise that no one is above the law, can turn a blind eye and allow this to happen, over and over, to the tune of multiple billions of dollars each year.
The first step toward change is awareness. And that's what was foremost on my mind the day I called my business partner, Deborah Louise Robinson, and asked what she thought of the idea of making a documentary.
Our hope is that Last Will and Embezzlement will shine a bright light on this global problem, help those who have potentially vulnerable adults in their lives to be on the lookout for signs of exploitation, and maybe even make some waves in the communities where the rights of these citizens are not being looked after nor protected by the public servants and law enforcement officials who are charged with that responsibility. This film is meant to honor my dad, who died very recently from Alzheimer’s.
Last Will and Embezzlement is a documentary film produced by Starjack Entertainment, starring Mickey Roone, and was accepted into the European Independent Film Festival in Paris, held March 30 to April 1, 2012. It examines the financial exploitation of the elderly and is expected to be released in the spring of 2012. Information is available at www.lastwillandembezzlement.com.
Ruth from California
I'm a person who is studying Alzheimer's. I have many links that have been of a great help to me and others. I have been educating people. It still seems to be "in the closet." That is wrong. It needs to be out in the open. The main thing that caregiver's need to take care of when a loved one is diagnosed is to take care of the legal and financial matters. That way, your loved one can tell you what they want via an Advance Directive. It is important that this be done so there is no worry about it in the future. The caregiver will be able and should not feel any quilt when it is time to put their loved one in a good facility when you can no longer take care of your loved one. You can always visit your loved one everyday. I hope this helps
Brooke from New York
I am a geriatric social worker and have been working with the same organization for over ten years. Over those ten years, I have seen clients go from being vital, active and sharp individuals to a shell of themselves. I have seen the families who have to watch their loved one disappear before their eyes, absolutely devastating for all. I dream of the day when people and their loved ones spend their "golden years" together in both mind and spirit.
Margaret from Puerto Rico
My father died of Alzheimer's. His youngest sister and brother also have this disease. My mother had dementia and her youngest sister is now in the early stages. Lately, I am told of more people who are afflicted with Alzheimer's disease, some relatively young. I fear for my future.
Marilyn from California
I am a Senior Advisor at a local Senior Center and over the years I have seen many, many cases of Alzheimer's. It is my personal opinion that this disease is right up there with Cancer. It seems that little funds are being directed for research for Alzheimer's and it is desperately needed.
I've watched firsthand what this unfortunate disease can do. My mother who is now in a nursing home has had Alzheimer's for over 10+ years now. When my parents retired, they believed that they would be spending it doing the things they enjoyed together, but this was not to happen. Instead my father spent most of those years taking care of my mom and it took a toll on his health. I did what I could do to help, but it wasn't enough as my dad had to make the difficult decision to place her in a home. My dad now faithfully sees her everyday there, and I am grateful that they have a very special and close relationship. Even though she is being cared for by wonderful, hard working people, I see more individuals come and go in a place, which like my mom those who are there didn't plan on spending their last days. It is heartbreaking to see the person you love lose themselves to this horrible disease. I pray every day for the families and for those who are affected. I am grateful that there are people who care enough to contribute their time, energy, and money in fighting to make Alzheimer's a disease that is either manageable or more importantly CURED.
Lillian from Ohio
Alzheimer's disease usually comes on slowly and is usually first recognized by your loved ones. LRC
Dorothy from California
My mother and my mother-in-law had to give up just about all their finances in order for Medicaid to pay for their care. We need better options. Luckily I bought my husband Long Term Care Insurance while he was still well. It would be impossible for him to get it now since he has a pre-existing condition. I can't get LTC insurance for myself since I have Multiple Sclerosis. So I'm also concerned that if I've inherited my mom's Alzheimer's, I would also have to become eligible for Medicaid, if it is still around.
Thelma from California
It is my one fear that I might end up with Alzheimer's disease. My family has suffered from cardiac disease, strokes and cancer. Two of my siblings have died. Only my mother lived into her eighties. These diseases you can fight with a healthy lifestyle but with Alzheimer's disease we are not sure of anything. Memories are priceless, even the bad ones. They go into who we are. The government needs to address this disease that is growing every year. I want to live a long time for me, my kids and my grand kids but with dignity and joy and me as me.
Mary from California
This disease scares me to death! Awareness of the grip it has on our nation with ever-increasing numbers being affected needs to be screamed from the rooftops! Speaking to friends it is almost a guarantee that this disease has in some way affected them! My mother, Annabelle, was diagnosed approximately 3 years ago, though the knowledge that something was wrong had filled our thoughts for some time. She is mother to eight, and when she began repeating stories over and over; we attributed it to her forgetting which "child" she had told the story to that day.
My father, her husband of almost 60 years tried to "protect" her by not sharing the issues that were going on. When it came to light, things began to change. Though my father felt he was the one who needed to care for mom, finally, after his health was severely affected, he has allowed us to help. It has been hard, especially when mom's older brother was also dealing with the disease and has recently passed away. She honestly doesn't know what is wrong with her, at this point though her health is good, her ability to express herself has been severely diminished. So here we have a family with two siblings with Alzheimer’s disease. How will it fare for mom's eight children? Please God...let there be a cure before this horrible nightmare embraces any one of my brothers or sisters.
Patrick from Massachusetts
I am a sibling from a family of 15. One of my older sisters died from Alzheimer’s about five years ago. Currently three of my older brothers have active Alzheimer’s disease. At 79 years of age I am next in line in my family as the oldest male. I also have three younger brothers. This disease has devastated our family and hangs like a black cloud over our futures.
KJ from Montana
My father is in the last stages of Alzheimer's. I have watched this vicious disease take his mind and his dignity, and I have seen it devastate my mother, his wife of over 50 years. It saddens me to think that my son or my nephews and nieces may have to deal with all of this years from now. We need to end this now so this next generation will not have to worry about us.
Carol from New Jersey
Alzheimer's disease stole my mother from me. It is as if she died. She does not remember one moment of my or my family's lives or of her own. It is much worse than if she had cancer.
Philip from Arkansas
I have lost my uncle, my grandmother, and now my mother to this terrible disease. We need to find a cure very soon for all the Mothers, Grandmothers and Grandfathers who are slowly losing their memories and their lives, to this disease that is so unfair. It robs the families of a loved one, and it kills.
Julie from Ohio
My grandmother was robbed of a wonderful life at an early age. She missed watching her grandkids and great grandkids grow up, family gatherings, but most of all she missed out on her life. I watched her suffer through this “mind blowing” disease, and I've had enough. Alzheimer's runs in my family, and it needs to stop. Thanks to all those who are fighting the fight for Alzheimer's. We must take a stand and do what we can.
I hope there is a cure for this disease that affects millions of people.
Sandra from Idaho
This dreadful disease has taken my husband of seven years and placed him with no short-term memory and robbed us of our being together. He lives in an assisted living facility in another city 32 miles from me. When I go visit, which is often, I see the many vacant faces of others who share this disease. It's so sad to see what they have lost and are losing. Can't there someday be a cure for Alzheimer's? I don't know what it would entail, but it's robbing so many of our wonderful people of their minds...something they used to use and be proud of. My husband was a teacher for 32 years - this is sad.
Amanda from Nevada
My grandmother has Alzheimer's. Physically, she is still with us, but she is no longer the matriarch of the family she once was. It has been so difficult for my family and me to watch her slowly leave us, forgetting who we are. It is especially difficult for my grandfather. He is her caregiver, and they have been married for more than 50 years. Please support finding a cure and preventive efforts, so no one else suffers from this disease.
Dorothy from California
My Mom had Alzheimer's for ten years before she died in 2006. She was such a life-loving woman prior to the Alzheimer's. Although her temperament was still wonderful even when she was in the throes of the disease, I missed my real Mom. She couldn't be there for me as she was during the first fifty years of my life. It's a terrible disease. My mother-in-law also had Alzheimer's for about five years before she died. She seemed to be locked inside her body and very unhappy about it. My husband currently has mild cognitive impairment (MCI), which has gotten worse over the past year, and could be a pre-cursor to Alzheimer's. Currently his short-term memory is impaired. I dread the day when he no longer remembers me or our son.
Sheldon from Texas
I lost my precious wife to the ravages of frontotemporal dementia (FTD). I fully support all the efforts that are being made to affect a cure for this cruel disease.
Cecilia from Texas
My mom has Alzheimer’s, and it is terrible to see the change in her. She has become so bitter and mean spirited it’s heartbreaking. I remember her being so sweet and kind. Her personality change has been dramatic. She cusses like a sailor now, when she never cussed before. She doesn't remember things that were said minutes earlier, but her long-term memory is phenomenal. She always says we blame her for everything and that we don't love her, no matter how hard we try and tell her over and over that we love her. Alzheimer’s is a devastating disease for the victim and for the family members. It robs you of your loved one.
Melora from Mississippi
I am a dementia care trainer in Mississippi. I would love to have to find another job because AD was cured, along with a few other dementia-causing illnesses. Please keep a strong plan for research, treatment, and therapeutic approaches to care going.
Mary from Texas
My family has dealt with Alzheimer's disease several times. My own father died of early onset Alzheimer's in June 1990 at the young age of 63. Now my step-father has Alzheimer's disease and my step-brother is even showing signs of this devastating disease. With the onslaught of persons in my age group (50's-60's), I feel we will be seeing more cases of this disease on a much more rapid pace. I feel that more government-funded research should be done. I for one am concerned that early onset Alzheimer’s may be hereditary and would like more research regarding early onset and late stage onset.
William from New Mexico
This common and ongoing tragedy must not be allowed to continue indefinitely. It brings so much heartache and expense into people's lives.
Marvin from Iowa
I have seen Alzheimer's firsthand. My father and his siblings lost their battle with Alzheimer's. I fear for my own future. Please help in the fight to cure this debilitating disease.
Janice from Maryland
My husband's father died from Alzheimer’s disease. He was a vibrant and very active man. It was very hard to watch him disappear before our eyes. Chances are that I will have to go through the same thing with my husband as he has the same gene traits. He is only 57 and, every time he forgets something, I worry if it is just natural old age or if Alzheimer’s disease has already begun. He is afraid to find out. His father died at 67 years old. I don't know if my husband has another 10 years to wait for an end to this disease. Please pursue research aggressively, not just for him, but for the millions of those who will soon share this problem. The toll it will soon have on our society is tremendous and difficult to even imagine.
My father has Alzheimer's, and I can see why it's called "The Long Good-bye." It is absolutely heartbreaking. I struggle to find help. Yet other diseases, such as cancer and AIDS, are much more highly funded. Is it because Alzheimer's is thought to be an "old person's" disease?
Deborah from New York
Alzheimer’s disease has robbed my mother of her old age. I am simply devastated from the effects on her. Of course, I fear that it will happen to me also.
Rob and Richard from Washington
I got the bad news today. My partner, Rob, was diagnosed with early onset Alzheimer's. He's only 55 years old, and for the most part he's a great guy. But why did this happen to us? Rob was experiencing mood swings, forgetting things like his keys, where we were going, sometimes he forgot what he said or he repeats something. One night he wet the bed, and he's very afraid right now. His Mother had Alzheimer's as well as his Grandmother and one Aunt. Rob and I have been together for 16 years, only to make me more afraid of what to expect down the road. His doctor is trying the patch on him and restricting his diet. We'll keep his life as normal as possible as the doctor suggested. I have taken care of him through the ordeal and will be there for him. He can function, but the doctor said by the time he hits 70, the disease will progress. Right now we're taking one step at a time. We are going to have more tests done for him.
Bobbi Goodwin from Texas
I have been caring for a woman with Alzheimer’s disease for 5 years now. She has been doing fair with this disease. It has taken its toll on her speaking, walking, eating habits, memory, and personality. She has moments of clarity and that fiery personality that I have loved about her for 10 years, before she got diagnosed. She becomes agitated very easily, so I have learned to avoid confusion and conflict as much as possible, to keep her happy and relaxed. I let her watch comedy shows instead of the news or violent shows and dramas, because I have learned that those types of shows upset her and agitate her. I make meals that are easy for her to pick up and eat herself, because she doesn’t always like to be fed. She likes to do things in her own time.
Just when I thought things couldn’t get worse, I was hit with a double whammy. My 53 year old Aunt was diagnosed with this disease and has now lived with it for 3 years. She is 57 now going on 58, and her frontal lobe of her brain is like stone and it is spreading to her left side. She can barely talk, mostly baby talk. She always tries to run and ends up hurting herself. She has been in the hospital for three months off and on, because they can’t seem to get her meds straight to keep her calm.
She doesn’t recognize everyone, always wants to fight people and see her mommy. This woman took care of everyone and I mean everyone and their kids, and now she has to depend on others to care for her! She is upset and cries because she knows something is wrong but doesn’t understand and it’s killing her. No care home wants to take her. They want to put her in a psychiatric facility and lock her up. I can’t believe that something like this can happen to people.
I have seen many diseases, deaths and sickness while caring for the elderly and disabled for the last 10 years. This disease is at the top of my list for worst things to happen. I know that in their lifetimes there will not be a cure, but I hope and pray that for our future generations we are able to find a cure for this disease and many others. I’m not an expert by any means, just someone who has dealt with this disease first hand and wishes that somebody would find a cure and eliminate this disease from the world!
Gonzalo Garza from Texas
Dolores was a very devoted wife, a loving mother and grandmother. She was a school teacher for 32 years. She was a very religious and caring person. She had the heart of gold, always pulling for the underdog.
We were married for 55 years and we had five children and eleven grandchildren. During this time, Dolores was a very healthy and active person. She was very careful about her diet and was always very energetic and active. In fact, her nickname was "lightening" because she was so quick in doing things.
We both retired after serving as public school educators, helping the children of Texas. It was a devastating experience for me, finding my wife beginning to succumb to this horrendous disease "Alzheimer's." Dolores had always been a very healthy person and to see her wearing a diaper and in a wheelchair, just crushed me.
For one year, I faithfully chronicled Dolores' assisted living experience. I painfully saw changes-physical, mental, and emotional -as they built up to the flood that washed away for ability, her personality, and eventually, her life. I went to see her every day, sometimes twice a day, driving 18 miles and then later 7 miles, to see her wither away before my very eyes. The lessons I learned were painful, but in the long run, helped me to understand and cope with a disease, "Alzheimer's", that I knew nothing about. This experience prompted me to write a book, "Living With Alzheimer’s.”
In my book, I offer information and recommendations for others who may be living through the trials and tribulations of having someone suffering from Alzheimer's. I walk through the different stages of this horrible disease, trying to offer answers to many questions.
- View a video of Gonzalo Garza where he discusses his life as a veteran of World War II, the Korean War, and Alzheimer's disease.
My Nona (grandmother) and I were always extremely close and there wasn't anything that I would not do for her. After a fire left her in a long-term care facility unable to care for herself, we began a four year journey together: From her transition from ICU hospitalization to permanent placement in a long-term care facility. As a university student completing a degree in Gerontology (the study of aging) I understood the complexity of care required as a result of the onset of dementia. I escorted her to all of her appointments, acted as her liaison with medical staff and played an active role in annual care conferences. I also provided ongoing reports to family about her condition/issues. While on this personal and academic journey I became very familiar with the community resources available (social workers, administrators, therapists, mental health practitioners and others). I visited my Nona almost every day, kept her up to date on what was going on in the world, family news, and made sure I was there when she needed something or just someone to talk to. It was very difficult and heart wrenching at times. However, I cherished her good days - when she knew who I was. On her bad days, I was just happy that I could be there for her to do whatever I could. My Nona was my inspiration and I am proud to have been a resource and comfort to my family.
It is my hope that I can help seniors and their families in the same way as I've started my own company, Cognitive Care Services Inc.
Johnny from Tennessee
I started living with Blanche 5 years ago. Blanche’s husband is 87 years old with mild dementia. Blanche went through the packing stages. Wanting to go 'home,' she packed 24/7, and we unpacked 12/7. Blanche was a waitress at a local Shoney’s restaurant for many years, where she 'retired.' Her husband, still alive, was a shriner and mason for many years. They adopted her husband’s sister’s son which wound up in federal prison to no fault of their own. Blanche was never violent, ever, she was the sweetest woman I have ever encountered. She loved flowers, life, church, god, the bible – all of those things that are instilled in us as children. Somehow she held onto those values during her battle with Alzheimer’s to the end. She passed away gently in her sleep in 2010. God rest her soul. Her husband is still living and is a Pearl Harbor survivor.
My advice to an Alzheimer’s patient is that routine is best, routine, routine. Do not break from the routine of daily habits. As far as dementia, it differs from time to time. He may have plaque on his brain that shifts sometimes. Once a month he acts like a 16 year old child, wild and ready to take on the world. Only my wife and I are there to keep him safe from the world and harming himself. I can offer a bit of advice for Alzheimer’s patients: play religious music during the day – it is calming. It seems to calm the wild spirit that's just below the surface. Caregivers are very dedicated people, I know. I’ve been there for someone that's not related to me for 5 years and maybe that's why it's worked so well. I'm on the outside, looking in.
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Jean Payne Harper from Virginia
Coping not Moping, with Macular Degeneration
I have macular degeneration. It’s more correctly titled, age-related macular degeneration (ARMD), but I don’t like putting that age-related part in. I already feel aged enough.
Lest anyone feels I am being funny about a serious problem, I feel it’s better to laugh, than to weep and whine.
I still have my peripheral, or side vision, I’m not totally blind, I can see the sky, trees just about everything, except, small print in books, newspaper, my checkbook numbers, I can’t sew, or read what I have written in normal size type. I can’t read can labels, or any kind of labels in the grocery, or other stores. I can’t even read prescription labels, which can be dangerous, or recipe directions, which can mess up a meal. But most of all I miss seeing faces, unless I’m up close and personal, and that’s closer than most Americans like you to be to them.
I can’t drive a car anymore, and that’s hardship in a rural environment. You’re housebound and lose your independence. You are at the mercy of family and friends. No matter how willing they are, you hate to take advantage of them when they are so busy.
While losing my center vision means I can’t read, write, sew, drive, or distinguish family and friend’s faces, it’s not all bad, I don’t recognize my own face in a mirror, so at least I can’t see my wrinkles.
While this ailment robs me of what I consider important parts of living, it also supplies some funny and embarrassing moments and makes me learn compensating ways to make life a little more worth living.
My motto now is, “Stop crying, and keep on trying. Stop moping and keep on coping.” When I can’t do what I used to, I look for another way to find what I can do. Help is available.
I couldn’t read books, but found books on tape, or CDs available at most public libraries. Also, Tapes and a tape player are free from the Library of Congress for those who qualify by verification from a doctor or other persons qualified to report their need of help because of vision problems.
When I wanted to continue writing, I found computer systems have already been developed to help the vision impaired write and work. I can increase the print size when I write and correct a story, then make the print more normal to send it off to publishers.
My Mac computer has Voice Over, a program that reads my email and other materials on the computer screen to me.
My local Department for the Blind and Vision impaired in Richmond, Virginia, has been invaluable to me, helping with “gizmos” to put on my home appliances so I can still use them, also helping with special binocular glasses to view TV, and especially helping me get back to writing with the help of an occupational coordinator and encouragement. Bless them all.
My mother, Gloria Smith, is 86 years old, and was diagnosed with macular degeneration when she was 65. She has been an artist all her life and this news hit her hard. She continued to paint as the disease progressed but her style has changed from realistic landscapes to abstract—for the obvious reasons.
Last year, she won a First Place award for Best Water Color Portrait from the Danville Women's Club (California State Award). Interestingly, her friend, Virginia Macky, won the award for Best Sculpture, and she also suffers from macular degeneration! The judges had not known the women were both legally blind and were shocked during the award presentations to learn these facts.
My mom receives your newsletters and always keeps hope that a cure will be found to restore her eyesight. She was excited last month after she read the news of the enzyme breakthrough. She tried the eye injections, but because she had already had laser treatments, they did not work for her. My mother tries not to get depressed about her situation, though.
She uses a 10X lighted magnifier to read the newspaper daily, and plays word games to stay alert. If not for her loss of sight she would be perfectly fine to live on her own. Proud Daughter....Barb
View a video of Gloria Smith and her wonderful art.
I have the dry disease in my left eye and the wet in my right eye. I've had 3 treatments of Avastin. After the second treatment, I developed a discoloration blindness. Our school bus is now a bright neon pink in place of orange. Many blues are now grey or green. Not a good thing for a knitter or painter. I hope that the problem will go away with more treatments. The doctor says time will help.
In February 2006, I was diagnosed with glaucoma in my left eye. At the time of diagnosis my IOP was 48. I was 57 years of age. I was given the usual round of medicated eye drops, pills and even two laser treatments. The eye pressure would get a little better at first then climb back up into the 30's. My eye care was then taken over by a glaucoma specialist and in October 2006 surgery was performed on the left eye to make a new drain hole. The surgery was very successful and I no longer need to take medicated eye drops in the left eye. However, I was also told that my right eye also had glaucoma but to a lesser extent. I take eye drops for the right eye and so far the pressure readings have been within a normal range. I was told that my optic nerve in the left eye had sustained severe damage as a result of the high eye pressures over that period of time and I had lost 50% of my vision!
Several years later straight lines became wavy lines; my depth perception was way off. When using the stairs I had great difficulty seeing where each step began and ended. I had to stop at each step to measure where I should put my foot to step. It was frightening to think my eyesight could be going all together. I went to visit the ophthalmologist and told him my symptoms. He ordered an OCT eye test that same day. He told me that if anything abnormal showed up he would call me. I did not hear back from him for over a month. In the meantime, the wavy lines and depth perception were getting worse. I made an appointment to see him and told him my symptoms again. He looked through my chart and found the results of the OCT taken a month prior. He was stunned to see the results were not normal. He dropped the ball on this one! He again had me tested that same day with a fluorescein and OCT test. The results were not good. In just one month's time, whatever was going on in my left eye had gotten rapidly worse. He suspected macular degeneration. I was sent to a wonderful Retina specialist who looked over all my pictures and did his own examination of the left eye and came to the same conclusion.
I had wet macular degeneration and needed to have surgery. The surgery was done in January 2009. During the healing process I developed a macular hole in the same eye. He repaired the hole that day with laser. Now, it's May 2011 and my central vision is totally gone in my left eye with only partial vision around the center. However, with the earlier damage from the glaucoma that vision is impaired.
I thank God for the vision I do still have in my right eye!! I thank God for the retina specialist who took good care of me during the surgery & recovery period and for the one year follow up. I can still drive the car, however, night time driving is more challenging. I still have some depth perception issues but at least I don't see wavy lines any longer.
May Williams, who lives in South Carolina, bought a car five years ago, but had to stop driving recently due to the progression of macular degeneration, “It’s terrible when you can’t drive anymore,” she said.
Williams still has a very full life, however, and has always enjoyed playing bridge, dancing, and especially bowling, which is her passion.
None of this may be seem terribly unusual, until you realize that Williams was born in 1911, which makes her 100 years old, and the oldest sanctioned bowler in South Carolina. “As long as I can bowl, I’m happy!” she exclaimed. Williams started bowling when she was 60 years old, and she hasn’t stopped since, bowling in leagues and tournaments that keep her very busy four days each week. How does she bowl now that she has macular degeneration? Her strategy is to send the first ball right down the middle of the lane, and then she gets guidance from her friends as to where to aim for any of the remaining pins.
Even though Williams’ vision makes it hard to read, write, or drive anymore, she feels that she has much to be thankful for. Her message to others is to not give up on hobbies if you enjoy them.
I have been legally blind for about ten years and took up photography to help me see. I found that by taking photos I can later see the details and the beauty that I miss while I am taking the picture. Using my large computer screen and pressing my nose about an inch from it, I can editor sort the photos, and enjoy the beauty of places like Alaska, Yellowstone and even Africa.
I count myself as one of the fortunate people afflicted with this condition because I am still able to see well enough to enjoy my passion of photography; however, this could be taken away at any moment by a deterioration of my retinas.
Please help me to stop having to shoot blind and help the other millions of Americans that are no longer able to live the full lives they once had, and donate whatever you can to this cause.
Thank you for your consideration and if you have a friend or relative that is fighting this condition that I can help, please contact me at email@example.com.
I have created a fund in the hopes of providing additional research dollars to find a cure for macular degeneration. Any money received through this fund will go to Macular Degeneration Research, a program of the BrightFocus Foundation.
Marion Reh Gurfein
Marion Reh Gurfein is a lively, educated, well-travelled, ninety-one-year-old artist who developed severe macular degeneration in her early 80’s. Marion utilizes new technology to enable her to live as normal a life as possible. She uses a Video Eye to magnify newspaper print onto a television screen and a monocular lens to bring faces and television into focus.
Marion is a big fan of audio books, which the Library of Congress sends her free of charge. A former watercolor artist, Marion had to not only stop teaching art classes, but had to stop sketching carvings on Victorian buildings in Washington, D.C.
She recently turned to a new form of art using colored paper, scissors, and glue, as she can still distinguish color and shape. There are 117 pieces of such artwork hanging in her guest room. Marion also writes poetry, which has been published in newspapers.
Marion has become a creature of habit—a place for everything and everything in its place—which makes it easier to locate items. She applied brightly colored stickers with bumps on them to her appliances to help her use them.
She walks with a brightly colored cane or a walker on wheels when she goes out, and she welcomes people who help her cross busy streets. Marion volunteered to appear in a video that helps explain how to cope with low vision.
When diagnosed, Marion was nervous and scared. However, her spirit and determination to go on is to be admired and imitated. She wants to be upbeat and positive for her three grandchildren and nine great-grandchildren. Marion’s advice is, “don’t be ashamed to admit you have a handicap. Work with and around it, and ask for assistance when needed, so you can take control again.”
Adapted from the 2010 Annual Report
Lloyd from Illinois
I have a new Mac Mini computer which has the easy capability of expanding what is on the screen by simply pressing down on the control button and rotating the mouse wheel forward and backward to control what is on the screen. I could not use the computer if it weren't for this capability. I imagine other computers can do this too.
Sandi from Texas
Arranging Mum's (Norma Jean's) closet
Purchase (clothes dividers). Write the day of the week on each divider + one w/EXTRAS. I put complete outfits for each day behind the day of the week; that way she or her dresser had everything to wear for the day without any decision/hunting process. Outfits behind EXTRAS were for weather change or freshening up. Undies were all stacked in an undies drawer or tub. Makeup was in a plastic tub (shoe-box), in the order it was to be used. All she had to do was pick up the numbered item; beginning with #1 and use; deoderant, moisturizer, lipstick and powder were a few of the items.
The items were all numbered as to the order they should be used. This was a simple and smooth way to begin each day. Her dresser was so pleased and so was Mum. I washed and changed out the closet each week or hung the second week using the same procedure. Soiled clothes went into hamper & second use items hung back in their section of the closet; blouses, slacks/skirts (black-red-navy-light,etc) and dresses.
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Margaret from Texas
My identical twin sister and I both suffer from POAG. At age 66 we have each been fighting this disease for over 30 years. We both suffer from normal tension glaucoma as did our father. He went blind in his 70's. What is amazing to me is the similarity between our cases. If you look at our Visual Field test results they are extremely close. We've lived apart and in two completely different areas of the country for almost 40 years. Definitely, this is hereditary. She just had surgery yesterday. I guess I'm not far behind. We've both had laser treatments. We're thankful for the vision we have left. But I will say that I get tired of stumbling, bumping my head, and running into people! Luckily we can still both drive.
Mary from Texas
I got pigmentary dispersion glaucoma when I was 34 years old. I am now almost 60. I haven't lost any sight. My advice is to ALWAYS take your eye drops as your doctor tells you to. I have NEVER missed mine, and I know that is a big reason I have done so well. I have never missed my 3-6 month appointments either. You see, my vision is so very important to me. My father lost sight in one eye and his father and sister were totally blind from glaucoma.
Brittany from Alaska
Hi, my name is Brittany and I went to the eye doctor several months ago. I had a visual acuity test done, and my eye pressure checked with puffing air monitor. Recently, my eye doctor gave me a glaucoma test. He told me I was a glaucoma suspect, which scared me. I told him that being born 13 weeks early might have something to do with it. I did have Retinopathy of prematurity (ROP) stage 3 plus disease, which was cured by chryotherapy. I see 20/22 now. Babies born early can get glaucoma early or later in their lifetimes as a result of retinal damage from ROP. Hopefully that's not the case in this situation. I pray that God is in control. God Bless All!
Maria from Maracaibo, Venezuela
“Mi Hija con Glaucoma Congénito”
En mi familia nunca se había escuchado del glaucoma, era una enfermedad desconocida para nosotros y muy a pesar de que somos padres saludables sin antecedentes de la enfermedad por tres generaciones y con un embarazo controlado nuestro primer hijo nació con glaucoma congénito bilateral.
Su nombre es Alejandra, y tiene 8 años. Ella fue diagnosticada a los 6 meses de vida, la noticia fue algo devastador. Solo sabíamos que era causante de ceguera, y eso nos aterro. La presión intraocular era muy alta y estuvo en chequeo desde su nacimiento por conjuntivitis. La vieron muchos especialistas hasta que a los 6 meses nos dieron el diagnostico de glaucoma bilateral congénito con presión elevada. Ella fue sometida de emergencia a una trabeculectomia bilateral y le recetaron gotas para controlar su presión. Fue todo un reto, luego nuevamente otra operación.
Hoy en día mi hija es una niña normal. Hemos intentado integrar el glaucoma a su vida como algo normal, es muy importante establecer rutinas y horarios para sus gotas son permanentes. Ella necesita las gotas cada 2 horas, alimentación balanceada, vitaminas, antioxidantes, ejercicios, relajación masajes, lentes oscuros y sombrero para días soleados, y muchísimo amor. Ella es muy feliz a pesar de que tiene miopía.
Ella tiene controles cada 4 meses, presión intraocular estable. Aunque es muy estresante y llena de angustia a nuestra familia, tratamos de darle la mejor vida posible. Ella es muy inteligente, está en el cuadro de honor cursa 3er grado, le encanta leer, patinar sobre hielo, y pintar. Ella quiere llegar a ser maestra, crear una fundación en nuestro país para ayudar a los niños que padecen esta enfermedad para enseñarles que la vida no acaba con el diagnostico sino que comienza.
"My Child with Congenital Glaucoma"
In my family, we had never heard of glaucoma. This was a disease unknown to us. We are healthy parents with no history of this disease for three generations. Despite having a monitored pregnancy, our first child was born with bilateral congenital glaucoma.
Her name is Alejandra, and she is 8 years old now. She was diagnosed when she was 6 months old. The news was devastating. We only knew that it may lead to blindness, and that was a terrifying feeling. The intraocular pressure was very high, and she was under constant medical care and check-ups since birth due to a conjunctivitis condition. Many specialists saw her before she turned 6 months old, which is when they gave us the diagnosis of bilateral congenital glaucoma with elevated pressure. She underwent an emergency bilateral trabeculectomy and had a dosage of eye drops to control ocular pressure. It was a real challenge. Then again she had another operation.
Today my daughter is a normal girl. We have attempted to integrate glaucoma as a normal part of her daily life. It is very important to establish routines and schedules that are permanent. She needs eye drops every 2 hours, a balanced diet, vitamins, antioxidants, exercise, relaxation massage, sunglasses, a hat for sunny days, and lots of love. She is very happy in spite of her myopia.
She needs medical exams every 4 months, and the good news is that her intraocular pressure is stable. Although it is very stressful and it brings a great deal of anxiety to our family, we try to provide her the best environment possible. She attends 3rd grade, is very smart, and is on the honor roll. She loves reading, ice skating, and painting. In the future, she wants to be a teacher and create a foundation in our country to help children with this disease—to teach them that life does not end with this diagnosis but to the contrary, life just begins.
London from Michigan
Your eyes Your Sight
Hello, my name is London Stacy. I am a young college student and a single mother of 1 baby girl. About two days ago, I found out that I have glaucoma. It ponders me, and it hurts me. I can’t sleep at night. I just want to stay up and watch my baby girl every second I can before my vision doesn’t allow me to. I’m coping with depression and trying to focus on life as if my eye doctor never told me I had glaucoma. I feel weird when I go to the eye doctor and see elderly people who have enjoyed their life and here I am the youngest patient my doctor has ever seen. Will I go blind? Or, when will I go blind? It can happen at any time. Again my name is London Stacy and I'm living with glaucoma.
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Last Review: 01/17/14