The Alzheimer’s Association supports the adoption of the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA) as introduced in the Ohio House of Representatives. Legislative action on the bill is imminent and we need your help to urge your legislators to vote in favor of the bill.
The current adult guardianship system in Ohio involves many barriers to addressing end of life issues, in part, due to the disorganized array of state adult guardianship laws and the lack of communication between states. This system has been problematic for loved ones’ efforts to establish needed guardianship across state lines, an increasingly frequent occurrence for those dealing with Alzheimer’s and related dementias. Simplifying one aspect of Ohio’s adult guardianship system by enacting UAGPPJA will go a long way in helping families efficiently deal with these previously difficult and complicated proceedings.
Please contact your state representative and urge them to vote for the adoption of the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act – House Bill 27 – when it comes to the House floor. Below, you will find a link to an easy to fill out form which will in turn send your request to your state representative. It should take less then a minute to fill out.
http://act.alz.org/site/Advocacy?pagename=homepage&id=305
Thank you for your continued advocacy and support.
Alzheimer’s Association Cleveland Area Chapter
Wednesday, November 30, 2011
Friday, November 18, 2011
Our Journey with Alzheimer's - Cliff & Margaret Lester's Story
It was at least sixteen years ago that the sneaky, destructive plaque began its insidious growth in the brain of my handsome, artistic, talented and wonderful husband. Alzheimer's disease slowly started to eat away his memory and his ability to do the things he had always done. He stopped working the crossword puzzles and the sketching he had done every day, and couldn't remember what day it was.
It was while we were living near San Diego, California that we became interested in Western Line dancing, and easily learned the small group of steps in each dance. It was fun! Before long we were teaching line dancing at our community center. Ballroom dancing requires pairs, but line dancing is a solo affair - in concert, certainly - but learned and performed alone. It was a real hit in our community of retirees, many of them widowed and without partners. We had been teaching dance most of our adult lives. Cliff was a professional tap dancer, and I taught ballet and interpretive dance for young children.
It was in this setting that he first visibly displayed undeniable impairment.
It was while we were living near San Diego, California that we became interested in Western Line dancing, and easily learned the small group of steps in each dance. It was fun! Before long we were teaching line dancing at our community center. Ballroom dancing requires pairs, but line dancing is a solo affair - in concert, certainly - but learned and performed alone. It was a real hit in our community of retirees, many of them widowed and without partners. We had been teaching dance most of our adult lives. Cliff was a professional tap dancer, and I taught ballet and interpretive dance for young children.
It was in this setting that he first visibly displayed undeniable impairment.
This lifelong dancer couldn't remember the simple line dance steps, let alone the more complex ballroom dances we enjoyed so much. That was when I took him to the VA Hospital in La Jolla, California. They performed a cat-scan, an evaluation and diagnosed Alzheimer's Disease.
Whenever I hear a familiar song to which we had danced, I imagine I am dancing with my darling.
We had moved from Cleveland to Honolulu, Hawaii in 1970 after Cliff was offered a job at the Hawaii Newspaper Agency overseeing the air conditioning of the printing plant and editorial offices of Honolulu's two daily newspapers. (When you are a dancer you learn many other crafts by necessity.)
We left our senior teacher in charge of our dance studio and went on to paradise. Honolulu had a small airport in 1970 and when we got off on the tarmac and felt the warm air and the smell of plumeria -- I felt deja-vu, like I was coming home.
We only knew one family in Hawaii whose children had studied at our dance studio. They introduced us to the wonders of Hawaii and the food and places tourists seldom taste or see. We had to eat our first lunch with chopsticks and I'm sure I finished with more food on my plate than in my stomach.
Cliffy was fine for the sixteen years we lived in Hawaii. But when our daughter, Teece, her husband, Larry, and our two young grandchildren left, it wasn't the same. But, that isn't entirely true. Before we ever left Cleveland Cliff had occasionally acted erratically. At least he didn't consult with me when he decided to quit the Cleveland Fire Department, after staying almost long enough to qualify for a pension. It was not like him.
Was that the beginning of a pattern I should have seen or just a bad decision?
He was Cleveland's Dancing Fireman - performing for school children and providing fire safety tips. He often appeared alongside the Singing Policeman and his horse. Cliff was once asked to perform at City Hall and he chose to do a duet with our daughter, Teece, who was only four-years-old. During their brief performance he changed the routine - which is seldom done, and never done in a group performance. Yet tiny Teece, eyes glued to his feet, dogged his every move and went right along with him. Only those of us who knew the routine knew there was anything amiss.
Did he just forget the routine? Could happen.
He was a wonderful teacher and choreographer and his students always won in competitions. He made hard work fun and laughter was part of his style. He was also an artist who designed and built scenery for the many musicals he directed. And we were always a team working together and loving each other. Eventually our three great children - David, Patrice (Teece), and Brian - each began teaching, except for Brian. He's a comedian, musician, and all-around entertainer.
David went on to become a motion-picture producer after he graduated from Northwestern University and went to Hollywood - and after years of paying his dues by performing many of the crafts that go into making a movie. His most well-regarded film is The Shawshank Redemption.
Teece is a pre-school teacher at the Lake Erie Nature and Science Center, introducing youngsters to the variety of life around Northern Ohio - snakes, hedgehogs, Red Tail Hawks. It's a wonderful resource and is very well attended by children who love her and call her "Teece".
Brian works as a sound and video engineer for the Nevada State Legislature and brings his special talents to facilitating communication. He does his part, even if the legislators can't work things out. And he continues to sing, play and entertain on weekends in Reno and Lake Tahoe.
David recalls his first real awareness of Cliff's impairment involved building. Cliff learned the building trades from his father, Chris, who had two fundamental rules of construction. Everything one built had to be impeccably vertical and horizontal, "Like a church", as he'd say. And further, you knew it was built sufficiently stout if you "could put a locomotive on it." That's how Cliff learned to build, and that's how he taught his sons. During the mid-1990's David was putting decks outside his recently remodeled home in Los Angeles. Observing David at work, studiously leveling and re-Ieveling at each step, Cliff indicated how impressed he was at the effort. But David was doing nothing more than he had learned at Cliff's side. That's when David knew something was amiss.
During our line dancing adventure in California I noticed Cliff getting agitated when I needed him to change the music or the tempo of the music that was playing. As he could no longer help with the teaching, he had taken over running the music for the classes. But simple requests for any kind of change upset him, and it seemed we argued all the time. Our students thought it was part of our act, but I knew we could not continue this way. I had to arrange for us to do less. We sold our home and moved north to a nice 55+ community in Murrieta, where for a while he did quite well and our neighbors didn't realize he had a problem.
But before long he became unwilling to go anywhere without me, even when our sons wanted to take him to our center to hit golf balls or shoot a little pool. Once he realized he could no longer do those things as well as he once had it made him angry and unwilling to even try.
Before long I attended to him 24/7. And after several years of that he became too attached. He became fearful and wouldn't even go to the store with me, worried I wouldn't be with him every single moment. He'd stay home. So I started going for groceries, shopping and returning all within one-half hour. And if I was delayed I would return home to find him pacing the floor - terrified that something had happened to me.
He wouldn't allow a caregiver in the house and made that clear in no uncertain terms.
He only wanted me. My children were concerned for the burden this had placed on me without family at hand. (David lives in Santa Barbara, Brian in Carson City, and Teece in Cleveland) They encouraged me to move near to one of them. We selected Cleveland to be near Teece and her family, my brother, Ron, and his family. Thank you, God, for my wonderful former neighbors Pat and Fred, who drove us to the Los Angeles Airport so we could fly non-stop to Cleveland.
We had sold our house, even when everyone advised us that the market was bad and it wouldn't sell. Well, I ignored all that and left it in "Divine Order" and never gave it another moment's worry. The house sold within weeks of our departure - full price, all cash. I don't think there has been another sale in that community since!
We moved on May 8,2007 and it seemed to agree with Cliff. He liked our new place and seemed quite content. Everything we needed was right in our building, so we seldom went anywhere. But if we were invited out for a family dinner, Cliff was ready to leave ten minutes after we arrived.
His world was getting smaller -- With only enough room for me. It's too hard!
As his mobility declined I could not help him enough. While not a big man, he dwarfed me and I could not help him to the bathroom or shower or help him get dressed. That's when I was introduced to Wendy's Heart. Wendy and Jason Swaney came into our lives and helped me keep Cliff going. They cared for Cliff lovingly and treated him like the man he had been. They are dear friends. They started helping me four hours each day and made it possible for Cliff to remain at home with me.
Our community dinners in the dining hall became more and more difficult. He could no longer eat without spilling his food on the floor and on himself. So I helped him eat before I ate my own dinner - and then he'd insist on leaving because he was finished. Many times I didn't get dinner at all. When I tried to slip downstairs to play cards with the other women and would leave him in Jason's care he became agitated and demanded that I be called back upstairs. So, that seemed to be the end of my leaving, even though he had such a wonderful caregiver.
About this time we got a little kitten that I picked out for Cliff because I thought it would be fun for him, but it turns out she (Lucy) picked me out. She spent every night with Cliff and watched him keenly.
When the kitten was about 9 months old, Cliff began waking up and getting out of bed each half hour. I would wake up, hear him stirring and say, "Clifty, it's not time to get up yet." One night he had been up every half hour through the night, me coaxing him back to bed, and by 3:00 am I was exhausted and fell into a deep sleep. Suddenly, I was jolted awake by the most horrible screech I'd ever heard. Lucy was sitting on the floor by my bed screeching at me, trying to wake me up. I followed her down the hall and into the den where I found Cliff on the floor between his easy chair and the closet door. I tried but I couldn't pick him up so I covered him with blankets and Lucy stayed by his side while I called for help. Jason, sent someone immediately to help get Cliff up off the floor and back into bed. Now I call Lucy my watch-cat because she checks me out every night to make sure I'm breathing.
It was during that time he started saying he wanted to die, and please, would I kill him. It was breaking my heart to see him in such pain. It wasn't physical because he had never been ill and never been hospitalized. Every doctor that saw him said he had a medical chart like a child. The dancing he had done all his life (and good genes) had kept his body healthy, but his brain was rapidly deteriorating.
I purchased everything I read about that might help Alzheimer's - tons of grapes (which he enjoyed), the latest miracle juices and vitamins - but the downhill continued.
We sought help from the Geriatric Clinic affiliated with Lakewood Hospital. During the intake I reported that I had help for four-hours each day and prior to that I had been his only caregiver from 1995 until mid-2007. I told the social worker that I now had help for the first time and they all just looked at me and said, "Four hours a day? And you've been taking care of him?"
They said, "You need more help!"
They further urged he be admitted to the hospital so the psychiatrist could evaluate and adjust his medications. During that hospital stay we concluded that he was growing too weak to stay at home, which would require two full-time caregivers just to move him around.
During that brief interval of hospitalization David and Teece surveyed every Alzheimer's facility in the area and chose three top candidates for me to look at.
We settled on a place that seemed the best choice because it was small, home-like, warm and friendly with loving caregivers and staff. He went directly from the hospital to the Alzheimer home and we had his furniture waiting there for him. He had his chair, dresser, lamps, TV and his bed and it looked familiar to him, and that's what I wanted -- for him not to be stressed out.
And the home agreed with him. He steadily improved and I thank the psychiatrist for finding the right medication for him. Before long he was walking and talking with us, so I knew whatever he was taking was helping. But the progress slowed and he weakened before long because when the mind deteriorates there's really no way to stop it.
Early in his stay Teece arrived for her first visit and found Cliff standing in the doorway of his room. She said, "Dad, I didn't know you could walk!" He replied, "I've been doing it all my life!" On his best days he would even dance with us in his room.
He seemed quite content. I can't say the same for me. I was here and he was there and "there" was a long way away.
Most of the residents there could feed themselves and so could Cliff, but sometimes the staff would forget to put in his bridge, so he would refuse to eat meat or harder vegetables. That and his failing eyesight conspired. Soon the caregivers took over his feeding. They would feed two or three people at the same time, one bite here and one bite there, but Cliff liked to eat fast. I remember a time when he was in the hospital. I was feeding him and Teece said, "You are shoveling that food in too fast!" I said, "OK, you do it." After two bites Cliff said, "I want the other girl." - meaning me, who shoveled in the food. So, when I could get to the Alzheimer's home in time I would feed him heartily, then take him to his room (with assistance) and get him into his easy chair.
Sometimes, during those last months, he would cry when he saw me and I so wanted to bring him home.
He was really ready to leave the home much earlier and I'm so sorry I didn't do it. But they insisted it would be traumatic for him if I took him home and then he had to come back. I kept telling them he was deteriorating. He just wasn't getting better. His legs were getting thin because they weren't walking him. At least I'd walk him or put him in his wheel chair and let him walk with his feet.
At one point I discovered that they were having trouble getting him up and they said, "We'll have to keep him in the wheel chair."
I told them, "I'm just going to take his hands and say 'Cliff, you stand up now. I'm going to walk with you and go to the bathroom.'" They said, "I can't believe you did that!"
I said, "He'll do it if that's what's expected."
But he really wasn't getting the care there. One day Wendy and I came up on the elevator and we heard him yelling. There were no staff on the floor. When we came in we found him stuck at the bottom of his bed trying to get out. That was the moment I thought, 'Nobody heard him!' It was afternoon and he was still in bed!
Whenever I hear a familiar song to which we had danced, I imagine I am dancing with my darling.
We had moved from Cleveland to Honolulu, Hawaii in 1970 after Cliff was offered a job at the Hawaii Newspaper Agency overseeing the air conditioning of the printing plant and editorial offices of Honolulu's two daily newspapers. (When you are a dancer you learn many other crafts by necessity.)
We left our senior teacher in charge of our dance studio and went on to paradise. Honolulu had a small airport in 1970 and when we got off on the tarmac and felt the warm air and the smell of plumeria -- I felt deja-vu, like I was coming home.
We only knew one family in Hawaii whose children had studied at our dance studio. They introduced us to the wonders of Hawaii and the food and places tourists seldom taste or see. We had to eat our first lunch with chopsticks and I'm sure I finished with more food on my plate than in my stomach.
Cliffy was fine for the sixteen years we lived in Hawaii. But when our daughter, Teece, her husband, Larry, and our two young grandchildren left, it wasn't the same. But, that isn't entirely true. Before we ever left Cleveland Cliff had occasionally acted erratically. At least he didn't consult with me when he decided to quit the Cleveland Fire Department, after staying almost long enough to qualify for a pension. It was not like him.
Was that the beginning of a pattern I should have seen or just a bad decision?
He was Cleveland's Dancing Fireman - performing for school children and providing fire safety tips. He often appeared alongside the Singing Policeman and his horse. Cliff was once asked to perform at City Hall and he chose to do a duet with our daughter, Teece, who was only four-years-old. During their brief performance he changed the routine - which is seldom done, and never done in a group performance. Yet tiny Teece, eyes glued to his feet, dogged his every move and went right along with him. Only those of us who knew the routine knew there was anything amiss.
Did he just forget the routine? Could happen.
He was a wonderful teacher and choreographer and his students always won in competitions. He made hard work fun and laughter was part of his style. He was also an artist who designed and built scenery for the many musicals he directed. And we were always a team working together and loving each other. Eventually our three great children - David, Patrice (Teece), and Brian - each began teaching, except for Brian. He's a comedian, musician, and all-around entertainer.
David went on to become a motion-picture producer after he graduated from Northwestern University and went to Hollywood - and after years of paying his dues by performing many of the crafts that go into making a movie. His most well-regarded film is The Shawshank Redemption.
Teece is a pre-school teacher at the Lake Erie Nature and Science Center, introducing youngsters to the variety of life around Northern Ohio - snakes, hedgehogs, Red Tail Hawks. It's a wonderful resource and is very well attended by children who love her and call her "Teece".
Brian works as a sound and video engineer for the Nevada State Legislature and brings his special talents to facilitating communication. He does his part, even if the legislators can't work things out. And he continues to sing, play and entertain on weekends in Reno and Lake Tahoe.
David recalls his first real awareness of Cliff's impairment involved building. Cliff learned the building trades from his father, Chris, who had two fundamental rules of construction. Everything one built had to be impeccably vertical and horizontal, "Like a church", as he'd say. And further, you knew it was built sufficiently stout if you "could put a locomotive on it." That's how Cliff learned to build, and that's how he taught his sons. During the mid-1990's David was putting decks outside his recently remodeled home in Los Angeles. Observing David at work, studiously leveling and re-Ieveling at each step, Cliff indicated how impressed he was at the effort. But David was doing nothing more than he had learned at Cliff's side. That's when David knew something was amiss.
During our line dancing adventure in California I noticed Cliff getting agitated when I needed him to change the music or the tempo of the music that was playing. As he could no longer help with the teaching, he had taken over running the music for the classes. But simple requests for any kind of change upset him, and it seemed we argued all the time. Our students thought it was part of our act, but I knew we could not continue this way. I had to arrange for us to do less. We sold our home and moved north to a nice 55+ community in Murrieta, where for a while he did quite well and our neighbors didn't realize he had a problem.
But before long he became unwilling to go anywhere without me, even when our sons wanted to take him to our center to hit golf balls or shoot a little pool. Once he realized he could no longer do those things as well as he once had it made him angry and unwilling to even try.
Before long I attended to him 24/7. And after several years of that he became too attached. He became fearful and wouldn't even go to the store with me, worried I wouldn't be with him every single moment. He'd stay home. So I started going for groceries, shopping and returning all within one-half hour. And if I was delayed I would return home to find him pacing the floor - terrified that something had happened to me.
He wouldn't allow a caregiver in the house and made that clear in no uncertain terms.
He only wanted me. My children were concerned for the burden this had placed on me without family at hand. (David lives in Santa Barbara, Brian in Carson City, and Teece in Cleveland) They encouraged me to move near to one of them. We selected Cleveland to be near Teece and her family, my brother, Ron, and his family. Thank you, God, for my wonderful former neighbors Pat and Fred, who drove us to the Los Angeles Airport so we could fly non-stop to Cleveland.
We had sold our house, even when everyone advised us that the market was bad and it wouldn't sell. Well, I ignored all that and left it in "Divine Order" and never gave it another moment's worry. The house sold within weeks of our departure - full price, all cash. I don't think there has been another sale in that community since!
We moved on May 8,2007 and it seemed to agree with Cliff. He liked our new place and seemed quite content. Everything we needed was right in our building, so we seldom went anywhere. But if we were invited out for a family dinner, Cliff was ready to leave ten minutes after we arrived.
His world was getting smaller -- With only enough room for me. It's too hard!
As his mobility declined I could not help him enough. While not a big man, he dwarfed me and I could not help him to the bathroom or shower or help him get dressed. That's when I was introduced to Wendy's Heart. Wendy and Jason Swaney came into our lives and helped me keep Cliff going. They cared for Cliff lovingly and treated him like the man he had been. They are dear friends. They started helping me four hours each day and made it possible for Cliff to remain at home with me.
Our community dinners in the dining hall became more and more difficult. He could no longer eat without spilling his food on the floor and on himself. So I helped him eat before I ate my own dinner - and then he'd insist on leaving because he was finished. Many times I didn't get dinner at all. When I tried to slip downstairs to play cards with the other women and would leave him in Jason's care he became agitated and demanded that I be called back upstairs. So, that seemed to be the end of my leaving, even though he had such a wonderful caregiver.
About this time we got a little kitten that I picked out for Cliff because I thought it would be fun for him, but it turns out she (Lucy) picked me out. She spent every night with Cliff and watched him keenly.
When the kitten was about 9 months old, Cliff began waking up and getting out of bed each half hour. I would wake up, hear him stirring and say, "Clifty, it's not time to get up yet." One night he had been up every half hour through the night, me coaxing him back to bed, and by 3:00 am I was exhausted and fell into a deep sleep. Suddenly, I was jolted awake by the most horrible screech I'd ever heard. Lucy was sitting on the floor by my bed screeching at me, trying to wake me up. I followed her down the hall and into the den where I found Cliff on the floor between his easy chair and the closet door. I tried but I couldn't pick him up so I covered him with blankets and Lucy stayed by his side while I called for help. Jason, sent someone immediately to help get Cliff up off the floor and back into bed. Now I call Lucy my watch-cat because she checks me out every night to make sure I'm breathing.
It was during that time he started saying he wanted to die, and please, would I kill him. It was breaking my heart to see him in such pain. It wasn't physical because he had never been ill and never been hospitalized. Every doctor that saw him said he had a medical chart like a child. The dancing he had done all his life (and good genes) had kept his body healthy, but his brain was rapidly deteriorating.
I purchased everything I read about that might help Alzheimer's - tons of grapes (which he enjoyed), the latest miracle juices and vitamins - but the downhill continued.
We sought help from the Geriatric Clinic affiliated with Lakewood Hospital. During the intake I reported that I had help for four-hours each day and prior to that I had been his only caregiver from 1995 until mid-2007. I told the social worker that I now had help for the first time and they all just looked at me and said, "Four hours a day? And you've been taking care of him?"
They said, "You need more help!"
They further urged he be admitted to the hospital so the psychiatrist could evaluate and adjust his medications. During that hospital stay we concluded that he was growing too weak to stay at home, which would require two full-time caregivers just to move him around.
During that brief interval of hospitalization David and Teece surveyed every Alzheimer's facility in the area and chose three top candidates for me to look at.
We settled on a place that seemed the best choice because it was small, home-like, warm and friendly with loving caregivers and staff. He went directly from the hospital to the Alzheimer home and we had his furniture waiting there for him. He had his chair, dresser, lamps, TV and his bed and it looked familiar to him, and that's what I wanted -- for him not to be stressed out.
And the home agreed with him. He steadily improved and I thank the psychiatrist for finding the right medication for him. Before long he was walking and talking with us, so I knew whatever he was taking was helping. But the progress slowed and he weakened before long because when the mind deteriorates there's really no way to stop it.
Early in his stay Teece arrived for her first visit and found Cliff standing in the doorway of his room. She said, "Dad, I didn't know you could walk!" He replied, "I've been doing it all my life!" On his best days he would even dance with us in his room.
He seemed quite content. I can't say the same for me. I was here and he was there and "there" was a long way away.
Most of the residents there could feed themselves and so could Cliff, but sometimes the staff would forget to put in his bridge, so he would refuse to eat meat or harder vegetables. That and his failing eyesight conspired. Soon the caregivers took over his feeding. They would feed two or three people at the same time, one bite here and one bite there, but Cliff liked to eat fast. I remember a time when he was in the hospital. I was feeding him and Teece said, "You are shoveling that food in too fast!" I said, "OK, you do it." After two bites Cliff said, "I want the other girl." - meaning me, who shoveled in the food. So, when I could get to the Alzheimer's home in time I would feed him heartily, then take him to his room (with assistance) and get him into his easy chair.
Sometimes, during those last months, he would cry when he saw me and I so wanted to bring him home.
He was really ready to leave the home much earlier and I'm so sorry I didn't do it. But they insisted it would be traumatic for him if I took him home and then he had to come back. I kept telling them he was deteriorating. He just wasn't getting better. His legs were getting thin because they weren't walking him. At least I'd walk him or put him in his wheel chair and let him walk with his feet.
At one point I discovered that they were having trouble getting him up and they said, "We'll have to keep him in the wheel chair."
I told them, "I'm just going to take his hands and say 'Cliff, you stand up now. I'm going to walk with you and go to the bathroom.'" They said, "I can't believe you did that!"
I said, "He'll do it if that's what's expected."
But he really wasn't getting the care there. One day Wendy and I came up on the elevator and we heard him yelling. There were no staff on the floor. When we came in we found him stuck at the bottom of his bed trying to get out. That was the moment I thought, 'Nobody heard him!' It was afternoon and he was still in bed!
I told them downstairs that it was ridiculous to have no staff on the floor and I want him moved out of there into a place where more people congregate.
But they ignore them there anyway. I thought it was very good when he first went there but I have definite feelings about that now. It was not as good as it should have been.
They didn't give him enough food. I tried to bring him milkshakes regularly, and I even brought him a hamburger once. He loved that.
I have to honestly say that they treated him with respect in the beginning and that did make me happy. Then some of the people that were so good with him left because they could make $2.00 an hour more at another place.
They left him in bed too much.
I said, "He doesn't have to be in bed!" She said, "Well this is easier."
And they had his pants down around his feet and I said, "Why do you have his pants down?"
They said, "It makes it easier to change him."
I said, "Get his pants up because he needs to be able to use his legs!" He was trapped. He couldn't walk without help, and there was just not enough help, so his dancer's legs eventually lost their muscle.
This was the very best place we could find.
Cliff couldn't put together what was going on with his body, but he knew he wasn't right. He told his good friend, "I'm just like a baby."
Cliff had been at the Alzheimer's home since April 15, 2008, and in November I tried to get him into the Assisted Living part of our home complex at Independence Village, where we had both lived since May 2007. But they would not accept him because at that time he could not walk or feed himself. No luck.
At that time my biggest worry was that I would die before he did and it would have been much worse for him to be left without me.
During this time I experienced many "meltdowns", but always in private. Except one day when a pianist was performing in the activity room he played one of our favorite dance songs. I couldn't hold back my grief and tears even though I didn't want Cliff or anyone else to see me break down. One of the caregivers said it wasn't unusual and tried to comfort me, which only made it worse. I grew up hearing the childhood refrain, "big girls don't cry." Sometimes keeping a stiff upper lip doesn't work when the blow hits below the belt.
I was feeling guilty about Cliff being there. And I was frustrated that our community's shuttle bus service severely limited when and how long I could visit him. I visited him every day I could, but sometimes I could not get a ride. All of my wonderful nearby family are working full time. But on the weekends Teece and her fiance, Dave, would take me for my visits. Cliff would stir himself and walk with us and he seemed to especially enjoy visiting with Dave. But regular help came from my companion, Wendy, who would gladly drive me on the days she was here. Cliff would love having David and Brian visit and Brian kept Cliff laughing with his funny faces and sound gags.
All this because I had sold my car in California!
I didn't think I would really need a car in Cleveland, and the prospect of driving across the country with Cliff in his condition seemed daunting. Back in California, when I would drive him anywhere he would often yell at other drivers, urging them to move over when they were fairly in their own lane. His perception made those cars a threat. Once he reached over and blew my horn and I blew my top and said, "DON'T EVER DO THAT AGAIN!" That was one of the only times I ever raised my voice to him, I think.
I always believed that Cliff would outlive me by many years because he was so healthy. So I was shocked when the nurse at the Alzheimer's home told me that Cliff's kidneys had shut down and that he might last two-days or maybe two-weeks.
The home arranged for the Hospice of the Western Reserve to assist me. Until then I had been so panicked that I didn't know what I was doing or saying, but I was determined to bring him home right away.
The Alzheimer's home people were saying that I had a lot to do before I could take him home. They wanted me to sign a lot of papers and other things but I said, "I'm not signing anything! I'm going to get the ambulance and take him home."
The hospice lady said, "I'll make that happen right now."
So they had the ambulance come at 6:00, but they should have made it come sooner because I was there all day. Nobody bothered us but I didn't get anything to eat all day and of course he wasn't eating anyway. I would just sponge his lips with the water and the sponge. I told him all day that I was taking him home.
And he knew he was going home.
While we waited I just kept telling him the same thing, "You're not coming back anymore. You're going to go home and you're going to be with me." He just got so peaceful. I knew he understood and heard every word.
I was really ticked waiting for that ambulance.
The ambulance people didn't want to put his jacket on him for the ambulance ride. I said, "Well, it's cold out there!"
They said, "No that's OK, we've got him wrapped up right here in the ambulance."
The ambulance drivers were from some other part of town and didn't know how to get to our apartment so I had to tell them how to get here. By the time we arrived Wendy and Sherri were here. They just pitched right in, and I was so grateful to Wendy and her helpers because they were here for us.
And I had finally got him home.
I truly didn't realize his passing was so imminent, so I told David and Teece and Brian to go ahead and have their Christmas and then to come here afterward.
At our home I sat with him, feeding him ice chips and swabbing his lips. It was intense - comforting him while flooded with my own feelings - and I had neglected to bring him a change of clothing. I improvised and put my pink and lavender PJ top on him. When the grandkids came to see him, they teased him about the pink PJ's and he smiled. By chance Cliff's sister, Juby, was here from Las Vegas visiting her daughter, and so got to say goodbye to Cliff.
At first I urged him to wait for David and Brian to get here so they could say goodbye, but Wendy told me he wanted to leave and he was ready. It was sad not having the boys here, but when I knew he was ready to go, I didn't want to keep him here. I said, "Cliffy, its OK for you to go. Your family is waiting for you, your mother and dad, baby Patrick, my mom and dad. It's OK for you to go."
On Christmas Eve leece, Dave, Zach, Shannon, Gwen, Caleb and Nikki each visited and left a message in Cliff's ear, and I am sure he heard every word. I said "Cliff, save me a place".
Hospice came that night and gave him morphine pills under his tongue to dissolve. He didn't have an IV or feeding tube or anything. When Zachary went into the room to tell his grandfather goodbye, he told me that he felt the peace of that room -- without the tubes and machines running. He said he thought that's what death should be -- beautiful, dignified and peaceful. He could feel peace in that room.
I used to think the worst thing that happened to us was the loss of Cliff's memory, but he remained the person he had always been except that his brain could no longer run his body, and he knew all of us right up to the end.
Teece and Dave stayed after everyone else left and they watched as I sat close to him, kissing his face. I said to him, "Cliffy, I am always kissing you but you don't kiss me."
Dave said to Teece, "Look, he's sending her a kiss!" One of the last things he did was try to pucker and give me a kiss.
He took two gentle breaths and left me. It was the most beautiful transition possible. He was so much at peace that he looked like a beautiful little boy.
After 65 years of marriage and several years before that when I met him in high school, it seems like I am missing half of myself and many times I wish I could join him sooner because life will never be the same again. He is my first and only love.
I do have a reason to stay until I finish this book and my life story, which is so much about him. I met him at a school party at age 15 and we were best friends ever since. When he was 17 he graduated from high school, already a professional tap dancer. I was intrigued because I was a ballet dancer in my heart. Cliff invited me to his prom. When he was 21 he proposed and urged that we get engaged before he left for the army. He wanted to know if I wanted a ring or a car, and silly me, I wanted the ring. He came home on furlough and we were married in 1943, but that is another story.
For weeks after Cliff's transition, I felt no grief, only a sense of relief that he no longer had to be stuck in that mind. I felt grateful that God had taken him so easily and beautifully. I had been doing fine, and with so much help from my children I had been able to do all the things that had to be done. Then, at about six-weeks, reality crashed in and I finally knew I would never see my Cliffy in his body again and alii had of him was a box of ashes. I had the biggest meltdown of my life.
About three-months after Cliff passed, on our 66th anniversary, I was overcome with grief and missing Clift unbearably. I sat on the footstool in our den leaning over Clift's chair, sobbing, unable to pick myself up. Lucy, the cat, would usually come and comfort me in my grief, but this day she kept her distance for a very long while. Then, for no reason, she came in and gave me a good hard swat with her paw and turned around and left. A few minutes later I still hadn't stopped sobbing so she came back in again and gave me two more hard swats.
Immediately, I knew the message was from Cliff. I could see his face and hear the words in my head saying, "Enough already!" I no longer felt that emptiness. It was instant. It was like, "I'm alive!" and I was!
I was back because he let me go.
He wasn't holding on to me, I had been holding on to me - for him.
I just know it was a complete transformation -- totally letting go of all the sadness and all the trauma and everything else. It was gone.
Most people gradually get over such a loss, but not like that -- in an instant! -- but that's what happened to me. I wanted everybody to realize that it CAN happen!
It was my cat that delivered the message and I couldn't ignore it. It was Cliff's message. I had to pay attention and it struck like thunder. I heard the words even though they weren't spoken aloud. I heard it and I knew it was his message.
It was like a load was lifted off my shoulders. He was sending me the message that I didn't have to grieve anymore. There are moments when I hear a song that reminds me that we're not dancing anymore and I feel a sense of sadness, but it's not anything like it was.
I hope this story will help others through their own journey, and know that God's love is always with you.
Margaret Lester
Avon Lake, Ohio
24 August 2009
But they ignore them there anyway. I thought it was very good when he first went there but I have definite feelings about that now. It was not as good as it should have been.
They didn't give him enough food. I tried to bring him milkshakes regularly, and I even brought him a hamburger once. He loved that.
I have to honestly say that they treated him with respect in the beginning and that did make me happy. Then some of the people that were so good with him left because they could make $2.00 an hour more at another place.
They left him in bed too much.
I said, "He doesn't have to be in bed!" She said, "Well this is easier."
And they had his pants down around his feet and I said, "Why do you have his pants down?"
They said, "It makes it easier to change him."
I said, "Get his pants up because he needs to be able to use his legs!" He was trapped. He couldn't walk without help, and there was just not enough help, so his dancer's legs eventually lost their muscle.
This was the very best place we could find.
Cliff couldn't put together what was going on with his body, but he knew he wasn't right. He told his good friend, "I'm just like a baby."
Cliff had been at the Alzheimer's home since April 15, 2008, and in November I tried to get him into the Assisted Living part of our home complex at Independence Village, where we had both lived since May 2007. But they would not accept him because at that time he could not walk or feed himself. No luck.
At that time my biggest worry was that I would die before he did and it would have been much worse for him to be left without me.
During this time I experienced many "meltdowns", but always in private. Except one day when a pianist was performing in the activity room he played one of our favorite dance songs. I couldn't hold back my grief and tears even though I didn't want Cliff or anyone else to see me break down. One of the caregivers said it wasn't unusual and tried to comfort me, which only made it worse. I grew up hearing the childhood refrain, "big girls don't cry." Sometimes keeping a stiff upper lip doesn't work when the blow hits below the belt.
I was feeling guilty about Cliff being there. And I was frustrated that our community's shuttle bus service severely limited when and how long I could visit him. I visited him every day I could, but sometimes I could not get a ride. All of my wonderful nearby family are working full time. But on the weekends Teece and her fiance, Dave, would take me for my visits. Cliff would stir himself and walk with us and he seemed to especially enjoy visiting with Dave. But regular help came from my companion, Wendy, who would gladly drive me on the days she was here. Cliff would love having David and Brian visit and Brian kept Cliff laughing with his funny faces and sound gags.
All this because I had sold my car in California!
I didn't think I would really need a car in Cleveland, and the prospect of driving across the country with Cliff in his condition seemed daunting. Back in California, when I would drive him anywhere he would often yell at other drivers, urging them to move over when they were fairly in their own lane. His perception made those cars a threat. Once he reached over and blew my horn and I blew my top and said, "DON'T EVER DO THAT AGAIN!" That was one of the only times I ever raised my voice to him, I think.
I always believed that Cliff would outlive me by many years because he was so healthy. So I was shocked when the nurse at the Alzheimer's home told me that Cliff's kidneys had shut down and that he might last two-days or maybe two-weeks.
The home arranged for the Hospice of the Western Reserve to assist me. Until then I had been so panicked that I didn't know what I was doing or saying, but I was determined to bring him home right away.
The Alzheimer's home people were saying that I had a lot to do before I could take him home. They wanted me to sign a lot of papers and other things but I said, "I'm not signing anything! I'm going to get the ambulance and take him home."
The hospice lady said, "I'll make that happen right now."
So they had the ambulance come at 6:00, but they should have made it come sooner because I was there all day. Nobody bothered us but I didn't get anything to eat all day and of course he wasn't eating anyway. I would just sponge his lips with the water and the sponge. I told him all day that I was taking him home.
And he knew he was going home.
While we waited I just kept telling him the same thing, "You're not coming back anymore. You're going to go home and you're going to be with me." He just got so peaceful. I knew he understood and heard every word.
I was really ticked waiting for that ambulance.
The ambulance people didn't want to put his jacket on him for the ambulance ride. I said, "Well, it's cold out there!"
They said, "No that's OK, we've got him wrapped up right here in the ambulance."
The ambulance drivers were from some other part of town and didn't know how to get to our apartment so I had to tell them how to get here. By the time we arrived Wendy and Sherri were here. They just pitched right in, and I was so grateful to Wendy and her helpers because they were here for us.
And I had finally got him home.
I truly didn't realize his passing was so imminent, so I told David and Teece and Brian to go ahead and have their Christmas and then to come here afterward.
At our home I sat with him, feeding him ice chips and swabbing his lips. It was intense - comforting him while flooded with my own feelings - and I had neglected to bring him a change of clothing. I improvised and put my pink and lavender PJ top on him. When the grandkids came to see him, they teased him about the pink PJ's and he smiled. By chance Cliff's sister, Juby, was here from Las Vegas visiting her daughter, and so got to say goodbye to Cliff.
At first I urged him to wait for David and Brian to get here so they could say goodbye, but Wendy told me he wanted to leave and he was ready. It was sad not having the boys here, but when I knew he was ready to go, I didn't want to keep him here. I said, "Cliffy, its OK for you to go. Your family is waiting for you, your mother and dad, baby Patrick, my mom and dad. It's OK for you to go."
On Christmas Eve leece, Dave, Zach, Shannon, Gwen, Caleb and Nikki each visited and left a message in Cliff's ear, and I am sure he heard every word. I said "Cliff, save me a place".
Hospice came that night and gave him morphine pills under his tongue to dissolve. He didn't have an IV or feeding tube or anything. When Zachary went into the room to tell his grandfather goodbye, he told me that he felt the peace of that room -- without the tubes and machines running. He said he thought that's what death should be -- beautiful, dignified and peaceful. He could feel peace in that room.
I used to think the worst thing that happened to us was the loss of Cliff's memory, but he remained the person he had always been except that his brain could no longer run his body, and he knew all of us right up to the end.
Teece and Dave stayed after everyone else left and they watched as I sat close to him, kissing his face. I said to him, "Cliffy, I am always kissing you but you don't kiss me."
Dave said to Teece, "Look, he's sending her a kiss!" One of the last things he did was try to pucker and give me a kiss.
He took two gentle breaths and left me. It was the most beautiful transition possible. He was so much at peace that he looked like a beautiful little boy.
After 65 years of marriage and several years before that when I met him in high school, it seems like I am missing half of myself and many times I wish I could join him sooner because life will never be the same again. He is my first and only love.
I do have a reason to stay until I finish this book and my life story, which is so much about him. I met him at a school party at age 15 and we were best friends ever since. When he was 17 he graduated from high school, already a professional tap dancer. I was intrigued because I was a ballet dancer in my heart. Cliff invited me to his prom. When he was 21 he proposed and urged that we get engaged before he left for the army. He wanted to know if I wanted a ring or a car, and silly me, I wanted the ring. He came home on furlough and we were married in 1943, but that is another story.
For weeks after Cliff's transition, I felt no grief, only a sense of relief that he no longer had to be stuck in that mind. I felt grateful that God had taken him so easily and beautifully. I had been doing fine, and with so much help from my children I had been able to do all the things that had to be done. Then, at about six-weeks, reality crashed in and I finally knew I would never see my Cliffy in his body again and alii had of him was a box of ashes. I had the biggest meltdown of my life.
About three-months after Cliff passed, on our 66th anniversary, I was overcome with grief and missing Clift unbearably. I sat on the footstool in our den leaning over Clift's chair, sobbing, unable to pick myself up. Lucy, the cat, would usually come and comfort me in my grief, but this day she kept her distance for a very long while. Then, for no reason, she came in and gave me a good hard swat with her paw and turned around and left. A few minutes later I still hadn't stopped sobbing so she came back in again and gave me two more hard swats.
Immediately, I knew the message was from Cliff. I could see his face and hear the words in my head saying, "Enough already!" I no longer felt that emptiness. It was instant. It was like, "I'm alive!" and I was!
I was back because he let me go.
He wasn't holding on to me, I had been holding on to me - for him.
I just know it was a complete transformation -- totally letting go of all the sadness and all the trauma and everything else. It was gone.
Most people gradually get over such a loss, but not like that -- in an instant! -- but that's what happened to me. I wanted everybody to realize that it CAN happen!
It was my cat that delivered the message and I couldn't ignore it. It was Cliff's message. I had to pay attention and it struck like thunder. I heard the words even though they weren't spoken aloud. I heard it and I knew it was his message.
It was like a load was lifted off my shoulders. He was sending me the message that I didn't have to grieve anymore. There are moments when I hear a song that reminds me that we're not dancing anymore and I feel a sense of sadness, but it's not anything like it was.
I hope this story will help others through their own journey, and know that God's love is always with you.
Margaret Lester
Avon Lake, Ohio
24 August 2009
Thursday, May 19, 2011
Making a Breakthrough for Alzheimer’s
Alzheimer’s Research Scientist and Professor Dr. Bruce Lamb was instrumental in garnering national attention to the need for funding and Congressional support for Alzheimer’s disease research. Last year, Dr. Lamb dreamed-up and spearheaded the Alzheimer’s Breakthrough Ride: a cross-country bicycle ride that raised awareness and culminated in a movement on Capitol Hill on Sept. 21, World Alzheimer’s Day. Thanks in part to his efforts, Congress passed the National Alzheimer’s Project Act (NAPA). This will be critical to advancing our efforts in research.
We honored Dr. Lamb at A Celebration of Hope, on Thursday, May 5, with the Community Service Award. Below, we share comments from Dr. Lamb on receiving the award.
FROM DR. BRUCE LAMB, PHD
This has been an amazing year for Alzheimer’s researchers from across the country! Not only because we are continuing to make strides towards a world without Alzheimer’s disease in the laboratory, but this year for the first time, researchers engaged in advocacy, riding their bikes over 4,500 miles across the United States in the Alzheimer’s Breakthrough Ride to garner petition signatures in support of Alzheimer’s legislation. Notably, the Breakthrough Ride helped lead to the passage of the first piece of federal legislation focused on Alzheimer’s disease, called the National Alzheimer’s Project Act –or NAPA- earlier this year. NAPA will develop a national office for dealing with Alzheimer’s disease and as such is a critical first step in the federal fight against this deadly disease.
I would like to take this opportunity to thank the contribution of the entire Alzheimer’s Breakthrough Ride Family, as we became known. This family includes the riders, who left their own families and jobs to train and ride their bikes for hours and days at a time often in extreme conditions. Some of the riders are in attendance tonight.
This family also includes the Alzheimer’s Association, who enthusiastically supported the concept of the ride from the very beginning. In particular, Nancy Udelson and the local Alzheimer’s Association Chapter provided an unbelievable reception for the ride in Cleveland last September. The Alzheimer’s Breakthrough Ride was born in Cleveland and it is certainly no coincidence that we reached our goal of 100,000 petition signatures the day the ride passed through the city!
Finally, the Breakthrough Ride family included my own wife, Samia, and my son, Raza, who rode over 300 miles of the route and my daughter Noura, who helped me train on our tandem bike.
I am proud that the Alzheimer’s Breakthrough Ride played a part in the passage of NAPA. However, NAPA does not include increased funding for Alzheimer’s research. Given the scope of the Alzheimer’s disease epidemic our country is facing, this is, simply put, unacceptable.
That’s why I need you to help me with a call and response that we used throughout the ride. When I say “Break,” I need you to say “Through.” Are you ready? What we really need in Alzheimer’s disease research is a Break…Through…Break… Through….Break….Through… Thank you very much!
Tuesday, May 17, 2011
Taking the Message into the Community
Mary Pat Sullivan has been the Speakers Bureau Coordinator at the Cleveland Area Chapter of the Alzheimer’s Association since July 2008. In this volunteer position, she revitalized our Speakers Bureau, providing outreach throughout our service area and training approximately 40 volunteers.
Mary Pat was honored at A Celebration of Hope, on Thursday, May 5, with the Volunteer Service Award. Below, we share comments from Mary Pat on receiving the award.
FROM MARY PAT SULLIVAN
I feel very honored to be given this prestigious award. I’m sure I’m like most volunteers --- doing volunteer work is simply my way of giving back for all the blessings in my life. I certainly wasn’t expecting an award, which makes it even more special. So, thank you to all of you who made that decision.
But the people I’d really like to thank are the 35 volunteers who are currently active with the Alzheimer’s Association Speakers Bureau. They are the ones I call at all hours of the day and evening, asking them to agree to yet another speaking event. They are the ones that agree to speak at meetings that range from 7:30 in the morning until 8:30 at night.
They are the ones that overcome the jitters of getting up in front of audiences that range from a handful to over 170 people. They are the ones who have given over 116 talks to the community in the last 3 years, and never missed one in all that time. If it weren’t for all of them, my job would not be award-winning.
Mary Pat was honored at A Celebration of Hope, on Thursday, May 5, with the Volunteer Service Award. Below, we share comments from Mary Pat on receiving the award.
FROM MARY PAT SULLIVAN
I feel very honored to be given this prestigious award. I’m sure I’m like most volunteers --- doing volunteer work is simply my way of giving back for all the blessings in my life. I certainly wasn’t expecting an award, which makes it even more special. So, thank you to all of you who made that decision.
But the people I’d really like to thank are the 35 volunteers who are currently active with the Alzheimer’s Association Speakers Bureau. They are the ones I call at all hours of the day and evening, asking them to agree to yet another speaking event. They are the ones that agree to speak at meetings that range from 7:30 in the morning until 8:30 at night.
They are the ones that overcome the jitters of getting up in front of audiences that range from a handful to over 170 people. They are the ones who have given over 116 talks to the community in the last 3 years, and never missed one in all that time. If it weren’t for all of them, my job would not be award-winning.
Thursday, May 12, 2011
Our Champions
At A Celebration of Hope, on Thursday, May 5, the Alzheimer’s Association Cleveland Area Chapter recognized several wonderful individuals who work tirelessly to advance the cause. This year we honored Nancy and David Hooker with the Champion Award for their long-standing and exemplary commitment to the mission and vision.
Here, we share their comments upon receiving the award. We hope it serves to inspire.
FROM NANCY HOOKER
Thanks to our family members and friends for turning out to support us. And, I want to publicly acknowledge how proud I am of my husband whose service to the civic, cultural and charitable institutions in our city is simply exemplary.
Being recognized as a Champion is so meaningful to me because Alzheimer’s is a subject that is important personally. My efforts on behalf of the Association are inspired by two women I loved: Kathyrn Scheafer, my grandmother, and Betty Hall, my mother. Both were active, clever women with puckish senses of humor whose lives were altered by Alzheimer’s disease. In their memory, I ask you to embrace three things.
First, never stop hoping that the Alzheimer’s Association’s vision of a world without Alzheimer’s is possible. More than at any other time, there is truly a reason for optimism. The prospects for developing treatments has never looked brighter.
But, if we are to take the next steps, we must never stop advocating for the commitment of resources for research. The funding required necessitates governmental support. In this time of deficit reduction, it is essential that we speak strongly and collectively that funding research for Alzheimer’s disease should be a priority. The Alzheimer’s Association website makes it very easy for any individual to become an advocate and to join with others to signal legislators that this is an issue of importance. If just one person at each table here tonight would go to www.alz.org and register as an advocate, it would be a first step in preventing a tragic injustice if funding becomes constrained just when the science is accelerating.
And the last thing I ask is directed to those who are caring for someone affected by dementia. Never stop communicating with that person, no matter how futile it may seem, because occasionally magic happens. That was my own experience. My mother had long since lost much of her communication ability when her Alzheimer’s progressed to its final stages. There were so many things I had waited to tell her and I feared it was too late. But I said them anyhow, mostly for my own peace of mind and not because I felt she would understand.
I thanked her for being a wonderful role model and teacher and told her that every day I did something “the Betty Hall way”. And to my great delight, she responded “You’re welcome.” I pressed on and told her so many other things and my mother responded with three words that were priceless to me. She said “You’ll be fine.” In that simple sentence the decade of her disease fell away and she was restored to being my mother again, offering me comfort and reassurance. I don’t want anyone to miss a similar opportunity, so keep trying.
Never stop communicating, never stop advocating and never stop hoping.
Thank you very much.
FROM DAVID HOOKER
I would like to thank the Alzheimer's Association and its board of trustees for selecting Nancy and me as tonight's honorees. We are grateful to you for this honor.
On behalf of both of us, I want to give special thanks to those who have made this evening a success. We are grateful to all of the corporate sponsors, and in particular we thank our friends at ---Forest City--- Nancy's former colleagues and our friends at Jones Day--- and my partners and colleagues at Thompson Hine—for their leadership gifts. As for me, I could not do what I do in this community without the aid and support of my firm, and I share this recognition this evening with my partners at Thompson Hine. Also I want to thank Marc Byrnes, Alan Rosskamm and Tom Stevens for their leadership; thanks to the work of those three and the corporate committee, we have achieved a great result for the Alzheimer's Association.
At moments like these, I am sure you feel the same appreciation for our community as I do. Whether it is for United Way, where I had experience last year, for the Alzheimer's Association, or for other important causes, time and time again the people in Cleveland and Northeast Ohio demonstrate, through their individual and corporate philanthropy, their concern about those in need. It is extraordinary.
Tonight we support the Alzheimer's Association. Our family, like many of yours, has experienced the challenge of dealing with this disease. But I want to thank all of you. Your presence shows your concern for those with Alzheimer's and your support for those who provide care to those who suffer from it. I hope that you take away a renewed appreciation for what the Association does to help those who face this disease.
Between us, the real champion for The Alzheimer's Association is Nancy. My contributions to the Alzheimer's Association and to our community all start with the wonderful support I have from my wife Nancy. I could not do it without her.
Thank you very much.
Here, we share their comments upon receiving the award. We hope it serves to inspire.
FROM NANCY HOOKER
Thanks to our family members and friends for turning out to support us. And, I want to publicly acknowledge how proud I am of my husband whose service to the civic, cultural and charitable institutions in our city is simply exemplary.
Being recognized as a Champion is so meaningful to me because Alzheimer’s is a subject that is important personally. My efforts on behalf of the Association are inspired by two women I loved: Kathyrn Scheafer, my grandmother, and Betty Hall, my mother. Both were active, clever women with puckish senses of humor whose lives were altered by Alzheimer’s disease. In their memory, I ask you to embrace three things.
First, never stop hoping that the Alzheimer’s Association’s vision of a world without Alzheimer’s is possible. More than at any other time, there is truly a reason for optimism. The prospects for developing treatments has never looked brighter.
But, if we are to take the next steps, we must never stop advocating for the commitment of resources for research. The funding required necessitates governmental support. In this time of deficit reduction, it is essential that we speak strongly and collectively that funding research for Alzheimer’s disease should be a priority. The Alzheimer’s Association website makes it very easy for any individual to become an advocate and to join with others to signal legislators that this is an issue of importance. If just one person at each table here tonight would go to www.alz.org and register as an advocate, it would be a first step in preventing a tragic injustice if funding becomes constrained just when the science is accelerating.
And the last thing I ask is directed to those who are caring for someone affected by dementia. Never stop communicating with that person, no matter how futile it may seem, because occasionally magic happens. That was my own experience. My mother had long since lost much of her communication ability when her Alzheimer’s progressed to its final stages. There were so many things I had waited to tell her and I feared it was too late. But I said them anyhow, mostly for my own peace of mind and not because I felt she would understand.
I thanked her for being a wonderful role model and teacher and told her that every day I did something “the Betty Hall way”. And to my great delight, she responded “You’re welcome.” I pressed on and told her so many other things and my mother responded with three words that were priceless to me. She said “You’ll be fine.” In that simple sentence the decade of her disease fell away and she was restored to being my mother again, offering me comfort and reassurance. I don’t want anyone to miss a similar opportunity, so keep trying.
Never stop communicating, never stop advocating and never stop hoping.
Thank you very much.
FROM DAVID HOOKER
I would like to thank the Alzheimer's Association and its board of trustees for selecting Nancy and me as tonight's honorees. We are grateful to you for this honor.
On behalf of both of us, I want to give special thanks to those who have made this evening a success. We are grateful to all of the corporate sponsors, and in particular we thank our friends at ---Forest City--- Nancy's former colleagues and our friends at Jones Day--- and my partners and colleagues at Thompson Hine—for their leadership gifts. As for me, I could not do what I do in this community without the aid and support of my firm, and I share this recognition this evening with my partners at Thompson Hine. Also I want to thank Marc Byrnes, Alan Rosskamm and Tom Stevens for their leadership; thanks to the work of those three and the corporate committee, we have achieved a great result for the Alzheimer's Association.
At moments like these, I am sure you feel the same appreciation for our community as I do. Whether it is for United Way, where I had experience last year, for the Alzheimer's Association, or for other important causes, time and time again the people in Cleveland and Northeast Ohio demonstrate, through their individual and corporate philanthropy, their concern about those in need. It is extraordinary.
Tonight we support the Alzheimer's Association. Our family, like many of yours, has experienced the challenge of dealing with this disease. But I want to thank all of you. Your presence shows your concern for those with Alzheimer's and your support for those who provide care to those who suffer from it. I hope that you take away a renewed appreciation for what the Association does to help those who face this disease.
Between us, the real champion for The Alzheimer's Association is Nancy. My contributions to the Alzheimer's Association and to our community all start with the wonderful support I have from my wife Nancy. I could not do it without her.
Thank you very much.
Saturday, April 9, 2011
Were live at the Club @Key Center
Our Daughters club event is underway. Taking on Alzheimer's: A National Conversation at Home
Monday, February 14, 2011
Valentine's Day and Alzheimer's by Margaret Furnas
Visiting Dad,
Will he remember me,
Valentine box of chocolates in hand,
It's February
Time and Days are like Groundhog days here The bulletin board in the entryway filled with cutout Hearts.
Dad sleeping
Dreams and sleep
Let him pass the time
Update the memo board
Oh Larry, Mary Kay and Patti visited
Dad's memory on a memo board
A kiss and hug on the forehead
Dad slowly comes back
Were his eyes always this blue
The color of the sea
Sitting up
Is that disappointment I see
I am still here
Yes Dad
Dad unwraps the pink flocked ribbon
Blue flocked wallpaper memories
Dad toasted my engagement in that room
Take my mind away from here
Dad lets fly away, back there
I did not know
Blue eyes
That
You
Would
Open
Chocolates
Here
All
Those
Years
Ago.
Cellophane
We both tug at it
Finally a seam is opened
Like Dad's transluscent
Skin
His tent
His soul is enclosed
His work
To leave
This
Earth
To Fly
Yes Dad
You are still here.
Chocolate hearts
Pour forth
We open the box
Upside down
Dad and I
Catch
The Falling Hearts
Love
Pouring Forth
In
Chocolate
It is a momentary
Escape
Dad and I enjoy
Love
It's just like that
It cannot be contained
It cannot be bound
Dad
Your Love
Bountiful.
Walking
The Halls
Dad
And
I.
We hold hands this time.
Searching
For
An
Escape
We come round again.
The
Room
Says
James Hoying
His address
All the homes
You
Built
Dad.
This is not of your own
Hands.
Trust
Faith
Chocolates
It comes
Down
To These.
Closed
Those
Blue Eyes
Dreaming
A New Address
A room
Being
Prepared
Just for
Dad
With
Blue
Flocked
Wallpaper
And
Chocolates.
Thursday, February 10, 2011
Setup is under way for Cadillacs, Cowboys and Cocktails
Kathy and Maureen are setting up the registration table... And yelling at me for taking pictures
Wednesday, February 9, 2011
Friday, February 4, 2011
Winning One for the Gipper
February 6, 2011 is the 100th anniversary of the birth of President Ronald Reagan. His place in American history cannot be overstated, although there is one particular aspect of his legacy that many of us may not realize. President Reagan was an early advocate for the cause of fighting Alzheimer’s disease, helping to raise public awareness about the disease with the first proclamation of National Alzheimer’s Disease Month in November 1983. Eleven years later, he publically announced his own diagnosis of Alzheimer’s disease in a poignant letter to the American people. To date, he is the most public figure to disclose an Alzheimer diagnosis.
Reagan’s diagnosis shows no one is immune to this disease — not even the man who once held the most powerful office in the land. His well-documented deterioration and ultimate death from Alzheimer’s shines a bright light on the devastating human toll of this disease for the Americans who live with it and those who care for them. President Reagan’s high profile struggle with the disease helped to eliminate much of the stigma that has been attached to Alzheimer’s. Today, years after his death, we have many vocal champions. Thousands of amazingly powerful voices across the country continue to break down the stigma and pave a better path for those who will follow. And together we intend to win one for the Gipper.
Nancy Udelson
Executive Director*Post has been submitted to the Plain Dealer as a Letter To The Editor for publication Sunday, Feb 6, 2011
Friday, January 28, 2011
New Generation Alzheimer's report calls Alzheimer's defining disease of the baby boomers
Starting this year, more than 10,000 baby boomers a day will turn 65. As these baby boomers age, one of out of eight of them will develop Alzheimer's — a devastating, costly, heartbreaking disease. Increasingly for these baby boomers, it will no longer be their grandparents and parents who have Alzheimer's — it will be them.
"Alzheimer's is a tragic epidemic that has no survivors. Not a single one," said Harry Johns, president and CEO of the Alzheimer's Association. "It is as much a thief as a killer. Alzheimer's will darken the long-awaited retirement years of the one out of eight baby boomers who will develop it. Those who will care for these loved ones will witness, day by day, the progressive and relentless realities of this fatal disease. But we can still change that if we act now."
According to the new Alzheimer's Association report Generation Alzheimer's, it is expected that 10 million baby boomers will either die with or from Alzheimer's, the only one of the top 10 causes of death in America without a way to prevent, cure or even slow its progression. But while Alzheimer's kills, it does so only after taking everything away, slowly stripping an individual's autonomy and independence. Even beyond the cruel impact Alzheimer's has on the individuals with the disease, Generation Alzheimer's also details the negative cascading effects the disease places on millions of caregivers. Caregivers and families go through the agony of losing a loved one twice: first to the ravaging effects of the disease and then, ultimately, to actual death.
"Most people survive an average of four to six years after a diagnosis of Alzheimer's disease, but many can live as long as 20 years with the disease," said Beth Kallmyer, senior director of constituent relations for the Alzheimer's Association. "As the disease progresses, the person with dementia requires more and more assistance with everyday tasks like bathing, dressing, eating and household activities. This long duration often places increasingly intensive care demands on 11 million family members and friends who provide unpaid care, and it negatively affects their health, employment, income and financial security."
The report also offers very personal glimpses into the lives of families who are in the throes of caring for a loved one with Alzheimer's disease, including a son who struggles to change the diapers of the mother who changed his as an infant, and a husband who watches his wife's fascination with the "lady in the mirror," not realizing the lady in the mirror is her.
In addition to the human toll, over the next 40 years Alzheimer's will cost the nation $20 trillion, enough to pay off the national debt and still send a $20,000 check to every man, woman and child in America. And while every 70 seconds someone in America develops Alzheimer's disease today, by 2050 someone will develop the disease every 33 seconds — unless the federal government commits to changing the Alzheimer trajectory.
"Alzheimer's, with its broad-ranging impact on individuals, families, Medicare and Medicaid, has the power to bring the country to its financial knees," said Robert J. Egge, Alzheimer's Association vice president of public policy. "But when the federal government has been focused, committed and willing to put the necessary resources to work to confront a disease that poses a real public health threat to the nation, there has been great success. In order to see the day where Alzheimer's is no longer a death sentence, we need to see that type of commitment with Alzheimer's."
The full text of Generation Alzheimer's can be viewed at www.alz.org/boomers.
Alzheimer's Association
The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's. For more information, visit http://www.alz.org/.
"Alzheimer's is a tragic epidemic that has no survivors. Not a single one," said Harry Johns, president and CEO of the Alzheimer's Association. "It is as much a thief as a killer. Alzheimer's will darken the long-awaited retirement years of the one out of eight baby boomers who will develop it. Those who will care for these loved ones will witness, day by day, the progressive and relentless realities of this fatal disease. But we can still change that if we act now."
According to the new Alzheimer's Association report Generation Alzheimer's, it is expected that 10 million baby boomers will either die with or from Alzheimer's, the only one of the top 10 causes of death in America without a way to prevent, cure or even slow its progression. But while Alzheimer's kills, it does so only after taking everything away, slowly stripping an individual's autonomy and independence. Even beyond the cruel impact Alzheimer's has on the individuals with the disease, Generation Alzheimer's also details the negative cascading effects the disease places on millions of caregivers. Caregivers and families go through the agony of losing a loved one twice: first to the ravaging effects of the disease and then, ultimately, to actual death.
"Most people survive an average of four to six years after a diagnosis of Alzheimer's disease, but many can live as long as 20 years with the disease," said Beth Kallmyer, senior director of constituent relations for the Alzheimer's Association. "As the disease progresses, the person with dementia requires more and more assistance with everyday tasks like bathing, dressing, eating and household activities. This long duration often places increasingly intensive care demands on 11 million family members and friends who provide unpaid care, and it negatively affects their health, employment, income and financial security."
The report also offers very personal glimpses into the lives of families who are in the throes of caring for a loved one with Alzheimer's disease, including a son who struggles to change the diapers of the mother who changed his as an infant, and a husband who watches his wife's fascination with the "lady in the mirror," not realizing the lady in the mirror is her.
In addition to the human toll, over the next 40 years Alzheimer's will cost the nation $20 trillion, enough to pay off the national debt and still send a $20,000 check to every man, woman and child in America. And while every 70 seconds someone in America develops Alzheimer's disease today, by 2050 someone will develop the disease every 33 seconds — unless the federal government commits to changing the Alzheimer trajectory.
"Alzheimer's, with its broad-ranging impact on individuals, families, Medicare and Medicaid, has the power to bring the country to its financial knees," said Robert J. Egge, Alzheimer's Association vice president of public policy. "But when the federal government has been focused, committed and willing to put the necessary resources to work to confront a disease that poses a real public health threat to the nation, there has been great success. In order to see the day where Alzheimer's is no longer a death sentence, we need to see that type of commitment with Alzheimer's."
The full text of Generation Alzheimer's can be viewed at www.alz.org/boomers.
Alzheimer's Association
The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's. For more information, visit http://www.alz.org/.
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