March 1, 2006
It's a little warm out today but yet it has a chill in the air. It's a beautiful sunny day, almost hitting 70, here in Florida. As I journal I have a sweater on and I'm still not overly warm. If I do much at all, then I get hot too quickly. It seems I go between not warm enough or too warm. My thermostat is broke and can't be fixed. Sort of like Humpty Dumpty who sat on the wall.
Fortunately we have a thermostat that operates our air conditioner and furnace. This time of year, I prefer just opening up the windows and doors and allowing the outside air to come inside.
I'm looking forward to more nice warm weather. Spring is here. Our spring will quickly go from warm to hot, and then I'll have another complaint. Lots of laughs.
March 2, 2006
When I go out by myself I try to carry with me a handkerchief, a small container of medicine I might need and a thin billfold with a few bills, for refreshments if wanted...ID and information on my medical condition, medications, and emergency numbers. I also wear my Alzheimer's bracelet. I find this to be very helpful and comforting to have on me. Plus, it doesn't take up much room in the front pockets of my levies and is very light weight.
Sharon has also made me a small card stating who I was, my condition and asking for others to assist me if ask or needed.
One never knows when one of these items are going to be needed.
I was thinking something that can be added to the list of medications is my doctor, his phone number, that I am allergic to penicillin, have a low insulin threshold, type of blood and that the best arm to get blood from is my right one. Other things could be added.
We also have a list of medications on our refrigerator door for emergencies. The ideas of things to be added to what I carry could also be added to this list.
We should always be ready for the unexpected. This allows me still to be independent of Sharon to some extent. I can safely be at a distance from my caregiver without her being overly worried about my well-being.
Sharon recently purchased a small cell phone for my pocket. This way we can call each other if I can figure it out. It's a simple, plain phone, so I shouldn't have much trouble and am eager to try it out.
March 3, 2006
I saw the neatest thing recently. This teenager came into the store where I was with what appeared to be street shoes but before I knew it, he was flying through the store with rollers on his shoes.
I was told by my daughter, Mary Ann that these unique shoes were available in the stores. I was wondering...just wondering, if they'd work for me. I tire easily of walking and this might be just the thing for me.
At one time, some years ago, I was a very good ice and roller skater. I enjoyed both. Perhaps If I practiced up a bit, got me some of these new shoes with rollers, got a crash helmet and some football pads, I could use a pair of these special shoes for my trips to stores and other places that have hard floors or good cement or pavement.
I was just thinking...I haven't brought it up with Sharon yet. I think maybe I should work on this new idea a little more before bothering her with my idea. Lots of laughs.
March 4, 2006
For years I watched "The Andy Griffith Show." It made me laugh, feel right at home and somehow I even found it to be comforting. We laughed at him and we laughed with him. I still watch reruns when I get the opportunity. They just don't make shows like that anymore. I wish they tried.
Don Knotts, TV's lovable "nerd" recently died. He was the "bumbling Deputy Barney Fife." The show ran from 1960-1968, I think I must have seen most or at least many of the episodes.
Don Knotts died at age 81. In recent years, he said he had no plans of retiring. I guess God had other plans for him. \
God's plans or what He allows is so different from my plans. His ways are so much higher than my ways. So much wiser than my ways. Many things about God I don't understand but this I know...God is love.
March 5, 2006
The neighbors puppy just followed my Grandson, Nicholas right into our living room. Nick didn't notice him, but I did. Nicholas is raking our yard of leaves today and the neighbor's puppy must have spotted him and well, you probably can guess the rest of the story. He's been happily here playing with Nicholas or trying to play, as he completes his work. He bites at your heel or leg trying to get your attention.Getting in the way more than out of the way. For such a pup, his teeth sure are sharp.
I noticed the puppy outside a little while ago and had to go to see him. He's really at a cute age and there's something about a man and a dog or a pup. I picked it up, petted and played with it and put it back down. That didn't satisfy her, it seemed, so a little more petting and playing was in order.
I had a boy hood dog named Rocky that I cared for.Now, Rocky was a big part of my boyhood life. Since that time we have had a couple dogs but they just don't seem to work out for us. We have a cat, Noel, and she does not take near the care or time that a dog takes. We just don't have enough energy to properly care for a dog...or I would have one. So I must settle for playing with other's dogs.
The problem with my playing with this puppy is that the more I play with her, the more she'll want to be at our home, especially since her parents work all day. The pup spots us and over she comes and won't go home when I would like it too. Still, I can't help myself when I see her. I think we have a problem here. Lots of laughs.
March 6, 2006
Another dementia buddy died recently. His name is Ernie Zugaro. Sharon and I were part of a dementia support group along with Ernie and his wife, Marion for many years in Akron, Ohio before we moved to Florida.
Ernie was a special person. He was always good natured, laughing and talking with the rest of us. I enjoyed his company. I learned that Ernie liked to golf and although he could no longer play the sport, his old gulfing partners would allow him to ride the gulf course with them on a gulf cart.
Ernie seemed to love pizza, much like I do. In fact, he had a friend that had a pizza parlor near where they lived. Ernie was allowed to be a part of the process and would tell me what good pizza they had there. I never did get to try it out.
Ernie was a family man. I met many members of his family at support meetings and activities from time to time. The family were very strong and caring supporters of Ernie.
I will miss Ernie. He has now passed on to a place called Heaven where dementia will never more be a part of his life.
March 7, 2006
When one is ill, diseased, or handicapped, it's so easy to think that your the only one and get into that poor me syndrome. For me personally, a pity party is fine for a short time but then, on with life. There is life after diagnoses and at least at times, for some of us, life is what we make it. Attitude counts much and our willingness to go on with life as it is, changing of course, what we can change and accepting the rest for what it is.
Now, just because I have been able to do that and am doing that at least, much of the time, I have no right to insist that all others do the same. It's so easy to feel that way but that would be wrong for me. Each of us our so different. When you've seen one with some disease or problem, that's all you've seen, one. We each handle life and what it throws us so differently.
Not being judgmental is not always the easiest, nor what comes natural. I must realize that I am not the only one ill or that have a disease and the rest of the world is not here to understand me nor care for me. Life goes on, and other's have their own lives to live.
There are many with dementia. Some are in the same stages that I am in. Some are not as advanced and some are more advanced. Some accept what has happened and many are in denial. Some work on issues and some do not seem to work on issues and possible have no desire too. Some get support and some do not. Some get medical care and some do not.
We all have a battle we are fighting, it seems. Some visible, some invisible. Some are verbal about it. Some are very quiet and private about it.
A battle can be an illness, disease or so many other things. Many of us are fighting more than one disease. Perhaps most humans have been fighting battles their whole lives. If I have not walked in their shoes, I do not know.
Someone said, "Be kinder than necessary, for everyone you meet is fighting some kind of battle." As we remember this, the world will be a better place for all of us.
March 8, 2006
In my local newspaper dated 3-16-06, in Dear Abby, I found an interesting, thought provoking column entitled,"Lying can sometimes be a blessing." There were several letters in response to a daughter of a mother who has Alzheimer's Disease. The daughter was uncomfortable lying to her elderly mother about the fact that her husband had died.
A therapist wrote in of an incident from her past at a nursing home where a woman in her middle stages of Alzheimer's had adjusted well to a nursing home but at a later time, had become depressed and began having daily crying times. The therapist went to visit the woman. The first things she asked was "Is my husband coming to see me today?"Her husband had been dead for twenty years.
Upon checking with the staff, the therapist found that the staff in the past had answered the question,"Yes, I believe he will be in later." However a new supervisor had been hired who did not approve of lying, making the staff tell the patient each time she ask that her husband had died. Each time the patient heard it, she became upset, believing her husband had just died that day and that she was hearing it for the first time.
Fortunately the supervisor changed her mind and the staff went back to telling the patient that her husband would be in later. It made the woman happy each time she heard it, and she spent the rest of her life believing that her husband was just running a little late.
A social worker wrote in and said that she found that "everyone needs to be told of deaths-but only once." She went on to say that "those with short term memory do not need to be reminded every time they ask, as it is painful, but that everyone deserves the dignity of grieving for a loved one at least one time. That death is a part of life, as so many elders with dementia understand."
I then read an article called In Diminishment, Spirituality Endures and Endures by Mira Mosle. She worked with Sisters in the Memory Care Unit of Caritas Center.
She says that "it's telling therapeutic fibs, taking the time to learn a Sister's reality at age 8, by pouring over photo albums and listening to the stories" that's important. When a resident asks,"What time is it on the mainland?" the knowledgeable person knows that the Sister is at that moment on the mainland where she spent years of ministry in Hawaii and knows how to respond to the question.
Sharon told me about a support meeting for caregiver's some time back where the group had discussed the importance of therapeutic fibs in being a caregiver. At that time I took this as lying to us as affected individuals and didn't like the idea much. I was always taught that lying was wrong and still consider lying to be wrong for me personally.
However, this column in Dear Abby and the article by Mira Mosle on working with Sisters in a Memory Care Unit has made me rethink therapeutic lying.
If we can be kept from sadness, depression, crying or worrying by one traveling with us into our reality and answering out of our reality, I do not feel it is lying. I feel it may be necessary to bring us the comfort and what we need at that moment. I also feel that it should not bring guilt to the person involved with us, but rather the assurance of knowing that a person's needs are being met at that moment.
Something to think about...
March 9, 2006
Those of us with dementia are not always wrong just because we have dementia. There are those who seem to think so. Automatically we are judged to be wrong without even being heard out or our comments considered. I am forgetful but many times I am correct in what I say. I may make mistakes...don't we all? Then there are times that I admit, I am down right wrong. One thing I don't do is deliberately lie. I tell it as I see it or understand it. How it appears to me. How I remember it. I am speaking out of my reality and that should be taken into consideration. Those listening are listening many times out of their reality and not always with their ears and hearts. Then there are those that really want to connect with us.
Our conversations might have to be listened to a little closer than one might normally listen to conversations, but in them one may just learn a lot about us, our past, our goals and hopes, our fears, our strengths and perhaps some of our weaknesses. Perhaps there are still things we want to pass along to you or others. We might even want to joke and laugh with you. One might learn something and then again, it might just be passing conversation. Passing the time of day. Polite conversation.
Just because we have dementia does not mean we no longer have something to say or that there is no meaning to what we say. The time might come when you must listen closer, put words together for us, help us with words when they just won't come, or watch or facial expressions and gestures. In probably won't be a bad idea if we each did this with everyone we talk to, dementia or not. Hearing not just the words, or lack of words, but what is meant and what is really being said. Perhaps what were unable to say. Treat as you would want treated. Please.
How bad to you want to be there for us? Do you really want to connect with us? It's possible but it takes the desire, patience, some creativity and perhaps some of your time.
March 10, 2006
Have you ever talked to someone who had all the answers, or at least, acted like they did? They knew it all. For me, these situations made me feel very uneasy.
I personally don't have all the answers. I don't know anyone who does. No matter how educated and read up we are, there's still things we don't know. There are things I'll never know, although I try to keep up on the news and read. I guess my Dad taught me how important it was to listen to the evening news and read the daily newspaper. The family also enjoyed the Reader's Digest and Preventative Medicine.
In school they began we students on what was called The Weekly Reader. It seems many classrooms had this paper for students. It had news written for our age level.
Then there were the school textbooks and books from the library. I remember Mom got a subscription to a magazine called Boy's Life for me. There were also school book fairs when we were able to pick books of interest that were for sale. I also recall the old book mobile that would visit our school. I found some great and interesting books during my visits.
As I left grade and high school and went into college, reading and learning became that much more important for me. There were constant research papers that had to be done by spending many hours in books and in the library.
I'm glad my parents instilled in me a joy and the importance of being informed by news and reading.
Mom would read me Bible Stories out of Hurlbut's Story of the Bible for Young and Old. My sister Anna would read me books on The Adventure of Tom Sawyer and Huckleberry Finn, Heidi, Roy Rogers and other cowboys. A school teacher I had, Gladys Earl wet my appetite to read and I turned in many well researched assignments to her.
In my profession as Minister and Social Worker, reading and research were an important part of my job.
As my energy becomes less and my ability to read is down to skimming many times, I am glad I had the experience of reading, learning and enjoying life through the writings of others. The hours I spend reading are becoming less and the time I spend on the computer and with the TV is the same. I tire so easy and the interest is not as great as it once was. The idea is still appealing for me but the follow thorough on my part is not as I would want it to be.
I can't say that I ever knew it all, not even close, but I can say that I was always continuing learning and that about college age, I really began enjoying it. I began taking it a little more seriously. I appreciate the fact that other's took the time and patience to introduce me to the joy of learning in what ever form it may have taken place.
I also enjoyed learning from others and still do. Many have shared there lives with me along my journey, for which I am grateful.
March 11, 2006
"Silence is golden," someone once said. I enjoy silence, I have to admit that back some years, this was not the case. When I was younger, I liked the music loud and enjoyed going to places where it was loud.
I recall a quickly planned trip by a friend, John Sone and myself around New Year's Eve one year. We got it into our heads that we wanted to spend New Year's Eve at Time's Square in Downtown, New Your. It didn't take long before off we went in my car.
Now the first thing we did was get lost in the worst part of the city. Then we played merry go round in the tunnels until we found our way out and found to a motel that we could afford.
John and I had a wonderful time exploring New Your and couldn't wait until New Year's Eve. As it came, the excitement grew and so did the crowds. I'll never forget the high noise level that filled the crowded streets of down town New Your that night. It was so loud that plugging your ears would not help keep it out for a moment. I never had heard such a loud noise level before and hope to never hear it again. Both of us seemed to enjoy the excitement, the moment and place as well as the fireworks and the ball that came down but once will do me. I now just watch the fireworks at Times Square, New Your, from my cough and my TV set.It's so much more enjoyable.
Now noise from a group was expected but quiet was something I had to get use to. The quiet of the country side. The quiet of being alone...The quiet of the classroom and the library.
I went through a time when quiet upset me. If I was with someone and they didn't talk much or I had to keep the conversation going, I became very uneasy. It was difficult for me to be with a shy, quiet person.
As I finally grew up a bit, I began to appreciate quiet. As I grew older I needed some quiet. Especially after working and coming home to two youngsters, who I love dearly.
As I began my career as minister and then social worker, quiet was a must for me to do my job. I craved those quiet times and looked for them.
Then I was diagnosed with dementia and got a little older. Now, I see why "silence is golden." Both Sharon and I need lots of quiet..times of silence. We can be quite comfortable with each other for hours with just silence. Quiet is a welcome guest.
Not that I don't talk and communicate because I do. I am a talker but still, I enjoy and insist upon times of quiet. I need them and desire them.
I have also learned to be comfortable with others that are shy and quiet. I do not shy away from these situations. I respect and honor them and can join in with the silence without feeling out of place or uncomfortable. I don't feel that I have to run from silence.
In my spiritual life, I am learning to have quiet times with my God. There's a place in the Bible where God says "to be still and know that I am God." It's not always the easiest for me because I want to do all the talking with no listening, but I am learning....to be still. Silence can be golden.
March 12, 2006
There I sat around a table at our Alzheimer's Support Group with my buddies that also have dementia. We were busy talking to each other as the leader had not began group yet. A friend sitting next to me, I'll call her Lorna to protect her real identity, looked at me for a few moments and then informed me that a hair in my beard was longer than the rest, requesting that she might be allowed to pull it out. Having trimmed by mustache and beard that morning, I thought I had it looking pretty neat, but still, for some strange reason I gave her permission. Perhaps it was because Lorna belligerent at times and I felt that this might keep her from becoming upset. Lorna reached over quickly, pulling not just one beard hair but quite a few. I did all I could to keep from yelling. A shot of pain shot though me, fortunately not lasting very long. She didn't just try to pull one beard hair but what ever her fingers touched. Rubbing my beard, I didn't notice hairs missing. If she would have pulled just a little harder, I would probably had a gap of hair missing from my beard. I tried to keep my composure, and only told my wife later about the event. She got a good laugh out of the incident. I've decided that sitting next to Lorna is not what I want to do in the future. I think this event made enough of an impression on me that I won't soon forget. We'll talk, but from a distance. Just thought I'd share.
March 13, 2006
Has someone ever told you that life was boring? I have been told, repeatedly. I try to explain that life is pretty much what we make it. Even with dementia, at least till the later stages life is what we make it. We have to put forth the effort, being active, being creative, and using some creativity. Some times being spontaneous even with my routine in mind.
Even when I am in the later stages, I hope someone has mercy on me and makes sure I am given things to hold, to touch, hopefully to help me connect or for a memory to make it's way though the fog. Show me pictures, give me objects that might just trigger something deep within. Connect me with the familiar. I hope they will talk to me, even if I don't or am unable to respond back. Just because I am not responding does not mean I cannot understanding to some extent and benefiting from the attempts.
When someone is in a coma, we still talk to them, hoping they will understand something of what we say. I remember once having surgery and being under sedatives. Although I could not get the attention of those working round about me after surgery, I heard much of what was being said and I remember having my own thoughts.
Little seems to be known about what dementia individuals in their later stages really understand. Personally at present I bounce between several stages of dementia. Do those in later stages do the same? Can those who love us make a difference in our situations inspite of the appearance of things? I'd like to think they can and will.
Life for me was always so busy and full of activity that I didn't know how to be bored. There was always something to do, a challenge, an activity, something new, an adventure just waiting around the next bend.
I love life. You might say I am high on life. I am surrounded with beauty, God's creation, goodness, love, people, friends and family. I just go from one thing to another, having pretty much a routine these days, but still enough diversity to make it interesting for me.
I never run out of things to do, between my naps. I don't stick to one thing very long. Seems my attention span is short and my concentration is weak but still, I forge ahead. I surprise myself at times with my accomplishments.
Life boring....never. It's a choice I make each moment, each day. I don't think of it as that but still, that's what it is, a choice. I just do it. Make it happen. Life for me is exciting, yes, even with dementia.
March 14, 2006
It pleases me when I can surprise someone with my accomplishments and conversation. With me it goes back to what dementia individuals are supposed to be like, I suppose. In the past, we were to be like those in the later stages today from day one. Sort of out of it. Not being able to contribute or articulate much. Being able to accomplish little if anything. Too many, we were just in the way, taking up space. Many were put away...in state hospitals or old age homes. Kept in the closet so to speak. Families were embarrassed and didn't talk much about that member of the family. We were kept at home and out of sight. Other's wouldn't understand or want to be around the likes of us. So it was thought. There was a real stigma and total misunderstanding about dementia and it's issues. Few if any services were available to those with dementia or their families. There was little if any hope. Thank God much has changed today. The picture of a dementia person is being changed. We still have a long ways to go and much work to do.
For one thing, those of us with dementia are being diagnosed much earlier than in the past. Doctors along with the general public are being trained that dementia is not necessarily an old person's disease and that much can be done for us when diagnosed and treated early.
Support groups are springing up for us over the nation and in other countries as well. In the past the Alzheimer's Association has been prone to only serve the caregivers of those with dementia. Today, many local Alzheimer's Associations are treating both the affected individual and caregiver with support groups and finding it to be a very successful approach. The Association still needs to be reminded that if it were not for those having dementia, their service would not be needed. They are working for us. Funding they receive should not only be used for national office and staff expense and research as important as that is. Funding received by the National Alzheimer's Association needs to filter down to the local Alzheimer's Association for adequate trained staff, housing and functions. I would encourage my readers to contact the national association, demanding that this take place quickly. The local Associations need your support. Funds raised at the yearly Memory Walks should be shared with local associations as to their needs and presently the local offices are not being adequately financed by the national office in Chicago. In many areas services have been cut and offices have been combined with other counties, making the task more difficult to reach the dementia community, in many areas making it almost impossible. Your help would be greatly appreciated in changing this lack of action on the part of our leaders in the national alzheimer's office. Please take a minute to contact the National Alzheimer's Office. Their phone number is: 1-800-272-3900. There address is: Alzheimer's Association at: 225 N. Michigan Ave.,Fl 17, Chicago, IL 60601-7633 I'd suggest you address your concerns to the Director or Directors and National Board of Directors.
There are many with dementia today speaking out. You will see books by those with dementia, not just by caregiver's. We are on TV, radio, featured in newspaper and magazine articles across the nation. We speak out where ever we are given the opportunity. Personally I have had the opportunity to address government officials and groups of all types locally, state wide and nationally. This has been considered by me to be an honor and a privilege as well as a duty. Many individuals with dementia are now being requested to be present and speak at the National Alzheimer's Association yearly meetings as well as on the day each year when the local associations meet at their state capital. Some of our members are speaking internationally. Our voice, issues and concerns are being heard. Because of the advocacy of many, positive change is being brought about that is changing the way the medical profession and the average citizen thinks about dementia.
We have our own email national community called DASNI. It is Dementia Advocacy and Support Network International. We now have a place on the email National Alzheimer's Association line to connect with them and others. There is also a 24 hour help support line at: 1-800-272-3900 operated by the national association. We also have many email support groups and communities on the computer where we connect with each other, encouraging each other personally and to be advocates for early onset dementia. We are changing the way the Alzheimer's Association addresses and serves those with dementia, locally and nationally.
We have only yet begun. We are pioneers. We are the advocates for change and education and won't stop until we are in stages that will no longer permit our advocacy. When one can no longer be involved on this level of advocacy, many will take our place.
Positive change is occurring across our land for which I'm personally grateful. It's not fast enough for many of us, but it has begun. It will take all of us, both affected and caregivers along with concerned friends and citizens to bring about future change that will make a lasting difference for those suffering with dementia. Your assistance and support is needed. Please let me know if you are making a difference. It will make my day.
March 15, 2006
Sharon and I have become members and a part of our community association. An association of neighbors who meet together occasionally to work side by side to try and make our community better.
In this time in history when you don't even know your neighbors and many are afraid of their neighborhoods or area in which they live, community associations can be beneficial in meeting neighbors and working together to make one's area better for all living there.
We meet at a local church who makes a room available to us. We have elected officers and speakers from our community that are involved in our care such as the Sheriff's Department, politicians, litter control etc. By becoming involved we give our neighborhood a voice and we become an extension of something more than ourselves. For me it is part of caring and working as a team.
It's so easy to get lost in one's own little world. I constantly attempt to enlarge my world by being a part and reaching out to others, refusing to isolate myself which is too easy to do. There are many times we have to push ourselves but we find it well worth the effort.
March 16, 2006
I had a dream early this morning. I can still remember it. It seems when I'm awakened by a dream, I remember it for some hours afterward.
I had gotten this new job in a very large building with many floors. For some reason I got lost. I tried to ask for directions back to my working quarters, but had forgotten the name of my new supervisor. About that time I heard my name being called over a loud speaker, asking me to return to my working quarters. I couldn't return because I was lost. Being lost gives one a bad helpless feeling.
It seems I was stuck in this situation for some time, causing me some stress. Perhaps this stress is what woke me up.
I've had dreams before about work situations in relationship to my poor memory. Being lost on several occasions but each time slightly different. I recall when I was still employed getting lost on several occasions related to my employment.
Being stuck in a bad dream is upsetting. I do take sleeping medication and it has been increased to assist me with my dreaming several times now. I think it might be about time to increase it again.
March 17, 2006
Sharon and I just spent a pleasant evening at our local county fair. It seems there was always a county fair in my life as far back as I can remember. This started me thinking about the fair in my home town, Dover, back in Ohio. It was the county yearly fair. It brings back lots of good memories for me.
I was a member of a local 4H Club called the Highway Happy Farmers for five years of my young life. Although we did not live on an active farm, we lived in the country and had a lot of acreage. We had a barn, a tractor with equipment and kept the fields out in Alfalfa, Timothy and Clover. We also had a large yearly garden but we did not keep live stock or farm animals. Dad worked at a mill for a living and did not have time to operate a full farm. I'm surprised how much Dad accomplished on the farm along with his full time job. I usually helped with the work, at least I tried to help, but was probably in the way more than not. Many lessons were learned on that old farm that I appreciate today. Lessons taught by my parents and the land on which we lived.
As a 4H Club member, I either raised a rabbit for the fair or did wood projects. The rabbits are long gone but a tool chest I made out of wood is still in existence and being used by family as a planter for flowers. I probably still have five years of blue ribbons-first place for those questioning, that I won for my yearly fair and 4H projects.
Because we were in 4H, we would get a full day off of school each year for the county fair. That was the day our projects were judged and we were excited for the extra day off of school and the fact that we got in free to be at the fair all day.
As with our local county fair, there were many events planned such as tractor pulls, country singers and many other exciting events. The animal barns were filled with farm animals and the exhibit buildings were always places that I found myself.
My county was a country setting with small towns, lots of farms, and cheese houses close by, it was an interesting combination. I remember that I enjoyed some good fresh Swiss Cheese, usually the winner from the many small cheese houses.
Swiss Cheese was my favorite cheese. My day would seldom end without a tasty meal from the Grange. The Grange was operated usually by rural people and for me, my meal would consist of some great home made soup, a sandwich and some pie. The Granges Organization in America have some of the best cooking at the fair as far as I am concerned. I've ate in many of them through the years.
There was always the cotton candy, candy apples, hand cut fries, apple fritters and on the list would go. My, what a time we would have eating, munching and crunching as we were entertained by all the action and people all around us.
I still enjoy going to small county fairs to this day. I don't stay all day any longer. Usually two hours about does Sharon and me in and we rides are not included in our fun or entertainment. County fairs are a good way to spend an afternoon or evening.
March 18, 2006
I was just reading an account of someone suffering with Alzheimer's Disease. He made a comment that stuck with me. He said, "I'm not Job. I try but I'm just not." My mind immediately went to the Book of Job in the Bible and the questions and answers that are there on suffering.
Not that long ago in my daily devotions, I read the Book of Job from the Bible. I used The Message by Eugene Peterson, a contemporary rendering of the Bible in contemporary language. By using this rendering of the Bible, I can really understand what I am reading and it keeps my interest. Really, the Bible is our Creator's love letter to each of us.
Job knew what it was to have a good life and then to plunge to the very depts of life. He knew the highs and the lows that so many of those with dementia go through. Job went through suffering long before us.
Some say that the book of Job is the oldest book in the Bible.
Eugene Peterson talks about Job's name being synonymous with suffering. He goes on to say that "Job ask why?...he ask why me? He ask his questions persistently, passionately, and eloquently. He refused to take silence for an answer. He refused to take clique's for an answer. He refused to let God off the hook."Job did not take his sufferings quietly or piously. Job is not important just because he suffered, but because he suffered in many of the ways that many of us suffer. Job protested his suffering and went "to the top" with his questions. He went to God himself. Read it for yourself.
There have been times when I have ask why me? There have been other times that I have ask, why them? Haven't you? If not, why not?
The article and quote by the individual affected with dementia got me to thinking and I'm still thinking about it. I may not ever really understand totally why we suffer or why the world suffers this side of Heaven, but someday, I'm sure it will be made more plain to me.
I think most individuals suffer at some level, in some way. Some suffer in many ways. There are those that complain loudly and refuse to accept their lot in life and then there are those that quietly seem to accept their fate without much of a battle. Is it really our fate or is it so much more than fate. I ask myself what lessons have I learned from my suffering. I can come up with a few. What was once considered a curse is no longer considered a curse. I can't say it is a blessing to suffer but I can say it has caused me to look within and without. Within myself and then out to other's suffering. It has caused me to be more thankful for the small things of life and to be a more spiritual person. Suffering has caused me to reach out to my fellow man as never before.To see things differently. I am still learning the lessons and still on occasion wonder why. In my daily journal I will continue to explore my feelings, attitudes, actions and lack of them. I will continue to question and to search. I will continue with my ups and downs, laughter and tears, successes and failures I will continue on my journey.
March 19, 2006
I'm beginning to second guess myself more often. I notice that I check to see if I've locked the doors usually at least the second time. I check to see if I've taken my medication a couple times. I feel my face to see if I've shaved. I check to see if I've used my arm deodorant, see if my "fly" is up...You know, important things.
I was going to church recently. I was still outside when I discovered by mere accident that my zipper was not up. I stepped over to the side of the church where other's could not see me and quietly made sure that it was in the proper position. Now the side of the church I had stepped too is lined with shrubs. No sooner than I got inside the building than my old friend Ed, laughingly ask me if I had gotten all the plants watered outside? How embarrassing. Maybe I'm using my bad judgment that the dementia literature talks about me having in mentioning this event on my journal, but I'm trying to make a point here.
I may need to double check things more often, especially at home or anyplace where dear old Ed will not mistakenly observe me. My caregiver can also be of assistance to me by mentioning things she observes or reminding me to do things I should think of but don't. Shoe untied will remind me to tie my shoe if I should forget. Little, gentle reminders that might just save us both from embarrassment or harm. I know my Sharon has more to do with her time than to check me out from head to toe but it is appreciated and I think other's appreciate it as well. Further more, I don't mind being checked out by Mrs. Sharon. Lots of laughs.
March 20, 2006
I think I have spring fever. Here in Florida were having more warm days than cool, and even when it's a bit cool, the sun is shining and for the moment, the world seems oh so alive again. Were in North Florida and the winter's although not bad, are still not near as warm as it is further down the coast.
I've always loved the spring after a long cold winter in the Ohio Valley where I grew up. I enjoyed the cold mainly because it brought snow, but it also brought cloudy depressing days with it,
As a youngster I looked forward to spring break and Easter vacation. The trees and bushes would begin to bud and the grass would grow and turn this beautiful green color. Flowers and leaves would shortly appear. The air was fresher and the land scape became alive again. The earth was no longer asleep. Vibrant life again reappeared.
I also looked forward to the spring because it meant spring break from school. Even with days off from school for snow storms and flood breaks, I couldn't wait till it was time for the long awaited spring break which meant a week off of school. No more teachers, class rooms or doing homework.
Spring also meant that summer would not be very far off and oh, how I longed for summer in the country. It seemed to last forever and a day. The days were filled with sun, outdoors, parks, swimming, biking, fun with a cousin and neighbor kids and church camp. There were picnics, family get togethers and the yearly family reunion and so much more.
I still look forward to spring. As a retired person, life is one long spring really, if you don't include the aches and pains that come with it. Spring is to be enjoyed if it's as a kid or as a retiree catching as many rays of sun as possible before the sun sets.
We always looked for any sign of spring. Early flowers would appear even under snow and ice, pushing their heads through. They were strong resisting the elements of weather, cold, ice and snow. At times they didn't survive or were not as nice but mostly, they were beautiful survivors. There were tulips, Easter lilies, crocuses, and many others.
Spring lifted sprits, allowed one to get outside more often and the cloudy, dreary, depressing days would begin to allow the sunshine to come through the clouds.
March 21, 2006
America just celebrated the 300th birthday of Benjamin Franklin. I know it was in the newspaper but I really didn't take much notice. At times I feel almost overwhelmed with the flood of information and news that I get day after day. It's a part of our times. After so much, out of survival one is forced to begin choosing what is the most important and what one can digest. Certain things are more important to me than others and my digestion tract doesn't work like it once did.
Benjamin Franklin is called by historians the "First American." He was one of the most prominent of the political figures and statesmen of the United States.
One of the things he was noted for was his curiosity, writings, ingenuity and diversity of interests.
I've heard his quotes through time and wanted to look some of them up on the computer. Here are only a few of the many that I discovered that pricked my interest:
"Fools need advice most, but wise men only are the better for it."
"Be civil to all; familiar with few; friend to one; enemy to none."
"He's a fool that makes his doctor his heir."
"Love your enemies, for they tell you your faults."
"No gain without pain."
"God helps them that help themselves."
"He that won't be counseled can't be helped."
"A man wrapped up in himself makes a very small bundle."
"I wake up every morning at nine and grab for the morning paper. Then I look at the obituary page. If my name is not on it, I get up"
Thanks Ben for sharing your thoughts and wisdom with the generations.
March 22, 2006
I just read an article by Joe D'Arienzos . Joe is the husband and caregiver of his wife Gertrude for 11 years now. Gertrude has Alzheimer's Disease. He is still the primary caregiver at the age of 84 with help from a part time nurse.
Joe does the household chores and cares for his beloved wife. He calls Alzheimer's Disease "a beast of burden. At times both bewildering and embittering him."
He says his life is full of "doctors, doctors, giving his wife medications and watching her balance."
This article made me think about caregiver burnout. How could one such as Joe not be burned out? I understand as one having dementia because I myself am a handful for my caregiver and wife, Sharon.
Caregiver's need all the support that we can give them. They need credit for what they do, many going above and beyond the call of duty and giving serious consideration to their marriage vows. Caregiver's need time for themselves often and lots of rest. They need what ever they need, when they need or desire it.
I want my Sharon to have her life while I have mine. I want her to care for herself and get the best care possible. I know she has a full load to carry.
One of the great benefits of following the Lord is that He ask us to cast our cares on Him, because He cares for us. As one does this, giving their cares to the good Lord, refusing to take them back, the load can and will become lighter. I've done it many times and He has never failed me. As we take our cares to Him on a regular basis and lay them honestly and openly before Him, caregiver's can experience a lighter load.
March 23, 2006
I recently read an article in the local newspaper discussing a speech by the youngest daughter of Dr. Martin Luther King, Jr. Her name is Bernice A. King. One thing she said of her father stuck with me. She said that "he let what bothered him motivate him." The call was to copy her "misfit" father.
I admire Martin Luther King Jr., If he was a misfit, I want to be one too. I don't always feel comfortable in this world of ours. I see the negative and want to make it positive. I want to make the world a better place for all of us to live in. By seeing that spark of God in every human being in the my world and the broader world around me. I'm not blinded by the negative. I see much that is positive with my world. Beauty surrounds me and there are many good people on planet earth. I'd like to think there is more good than bad with the world but the bad seems to over shadow the good. After the local news, I usually read the comics for some comic relief.
Being aware of what is going on in my world allows me to either be pulled down or to be a channel for change. It allows me the choice to be a blessing or a curse. I don't know that there is a middle ground in this matter.
It seems there are those that choose to bury their head in the sand and pretend that the world is not really there. Then there are those that become part of their world and history. They chose to take off their sunglasses, get rid of prejudice and hate, drop excuses for not being a part of the answer. When we choose to not be a part of the answer we choose to be part of the problem. I try to reach beyond my preconceived ideas and my comfort zone. For me, it makes life worth living as I attempt to live out the words of Christ in a world that refuses to follow Him.Let's allow what bother's us too motivate us.
March 24, 2006
It's so embarrassing and upsetting to me. It's my voice. I can no longer count on it to be vibrant, loud and heard or understood. It's part of my dementia, my Lewy Body Dementia. Not all with Lewy Body Dementia have my condition with voice, but many do.
I have a special phone for those with impairments. It magnifies my voice, or is supposed to. For a long time after I got this special phone, I thought one of my prayers was answered. I could be heard and understood again.
My mother was in the nursing home back in Ohio at that time and although I could not be with her because of living at a great distance from her, I wanted to talk to her. The special phone worked for some time. Mon and I would have delightful phone conversations. It was just like a visit with her. We would share, laugh and enjoy each other for a time. Then her dementia stages got worse and perhaps her hearing and ability to hold the phone correctly, listening and conversing. My loss of not being able to connect with her by phone was painful.
For the first years of my dementia, being diagnosed with the early stages of Alzheimer's Disease in 1997, I was able to communicate much the way I always had orally. I was even able to advocate for those with dementia by speaking on the local level, on the state level and in Washington, DC. I loved it. I was still able to help others, to share my life, to speak and be understood.
Some time back, I had to give up speaking too groups. Although the desire was and is still strong, I came to realize that much of what I said was not being heard or understood. This was very upsetting for one who has spent much of his life as a minister and social worker, using my speaking skills to help and assist my world and reaching out to those outside my world. It was also unfair to those who came to hear me speak.
A few years ago, I had to step back and honestly look at where I was presently and my remaining abilities and inability's. It was another loss for me with my voice difficulties, however for the sake of others, I had to turn down speaking engagements. This hurt and the ache is still there. I didn't need another loss. Those of us with dementia have already had too many losses.
With my special phone that I have, I just made two personal calls. I guess I have a hard head and learn my lessons slower than I once did. Perhaps lessons learned these days is closer to the pattern of how I learned lessons as a child and teenager. Neither of those I called could understand me and what I was trying to communicate. Of course this was unsettling for me.
This loss is difficult for me but one that I am being forced to face more and more. I have to come out of denial and accept that my voice loss is permanent, in fact it's growing worse. I will now try to channel that energy into other areas by being creative.
I can still write, so write I will. By journaling I can still share my life, my story...and still help others that cross my path through my daily journal. Someone once said that when God closes one door, He opens another one. I don't know that God caused my dementia or voice loss. I don't know that He closed that door on me. It seems as humans we can be so quick to blame God for the bad and negative and slow to give Him credit for the daily blessings, the good, the gifts He gives us. I am human too, very human, and need to be reminded to be thankful. When I look around me and my world, there is so much I have to be grateful for. Things just happen in this world to both good and the bad. My Bible says that "God is love." I have believed that since I was old enough to understand and plan to take that belief with me to the grave. My faith gives me a positive outlook on life and a smile. I tend to see the glass as half full, not half empty. I'm not blind. I see the bad but I see oh so much more good in my world. I have bad moments and days, but more good than bad. Voice or strained voice, I will keep on talking but I will use self set limitations which my talking.
March 25, 2006
Caregiving is difficult. I see how my wife struggles as well as many other caregivers.
I have a sister in law, Carol, who takes care of my brother who also has Lewy Body Dementia as well as three others who need her assistance and care, Carol is not as young as she once was and has her own health problems. How does she do it? Where does she get the energy to do what she does? Why does she put her self through what she does? The questions keep coming but the answer that come to me for her care is love. She loves those she cares for and shows it by what she does.
I'm sure it's not easy. It can't be. I'm sure she gives up much, suffers for what she does and how she pushes herself. I'm sure she has little time for herself,but...she keeps on caring and has been for a long time now. The care goes on and on.
Caregiver's are in a class of their own. They are worthy of praise and thanks. They deserve any credit they may get. Money could never pay for their service. They ask for so little in return for what they do.
God bless Carol. God bless my caregiver Sharon and may God bless the caregiver's of the world.
March 26, 2006
I was just thinking of something I heard. "Comparing ourselves with each other is not productive."
With dementia individuals, "if you've seen one, you've seen one." Although there is a list of symptoms that we might have at one time or another, we are each so different. We go though the stages of dementia but many of us swing back and forth constantly and each of us seem to go through stages at different times. We go from being diagnosed at very young ages too very old ages. We all have our own unique personalities and ways of doing things and handling life. We were each raised differently with different standards and different values. We have different likes and dislikes, We come from different backgrounds, different races and ethnic backgrounds. Some grew up in cities and some in small towns or country. Some are of different political and religious persuasions. Then there are those that have decided not to be religious or political. Some are loners and some really enjoy being with others. Some are married, some unmarried, some widowed, some of different sexual preferences. We have different strengths and weaknesses. Some of us are short and some tall. Some are skinny, some heavy, some feel they are just right. Some feel they are prefect and some feel very inferior. Some are well educated and some lack education. Some are talkers much like myself and some are very quiet. Some are outgoing and then there are those that are shy. On and on the lists go. I'm sure you could add to it.
To compare us to one another or for us to compare our selves with one another is much like comparing oranges with apples. Both are fruit but both are very different from each other.
I feel comparing ourselves and those we love can only bring us down. I recommend just being who we are at any given moment and excepting ourselves for who we are. Acceptance of who we are is not always easy but it is possible. Personally, when I accept myself for who I am and other's for who they are, I am much more content with life.
So how can we possible judge ourselves with another or be judged by others with another? It is not productive.
March 27, 2006
I was just thinking about the slow lane. Born and raised in the country, I traveled in the slow lane, that is until I reached college days. Suddenly I was on my own, working my way through college. The slow pace that I had known turned quickly into a fast pace that never really slowed down till I was diagnosed with dementia. Perhaps a few years before while I was struggling to know what was happening in my life. My life began to change.
There were times of sick days, snow days, holidays and vacation days when life had slowed for a small amount of time, but I always knew when I returned to the real world, or the world I knew, it would go right back to the hectic fast pace for me. In fact, I usually had to make up for being off when I returned home and to work. I had to go faster yet. My life was a whirl and no matter how fast I went, I could never really keep up.
I hadn't reached retirement age yet when dementia hit me and my life changed forever. I went from the wild fast pace to a slow pace, which I'm still on. Retirement came early but it was due to medical conditions, dementia. The slow lane replaced the fast lane. I didn't like the change. I wanted to go back to the fast lane which I was accustomed to for so many years, but it was impossible. There were parts...many parts of the fast lane that I had enjoyed and accepted. Many times I felt I was on an adrenaline rush. Almost a high but drug free. I am still after many years adjusting to the change in lanes in my life. I don't resist it as much as I first did. I know that resisting is futile. At times I fuss about it and I take medication and do what I can too make it more bearable. I thought we were too enjoy retirement but with dementia I find that I really don't enjoy the change much. I have more time to do what I always wanted to do but find I am unable to do it.
It's a bit of a mystery to me. Although time flies by and I don't know where it goes too, I'm in the slow lane of life. The moments quickly turn into days and the days into weeks. The weeks quickly turn into months and the months into years. Still, I live life in slow motion.
In all this time I have in the slow lane of life, little seems to be accomplished and so many things are left undone. My desire peeks at times to do, to act, to push ahead but the energy is not there nor the mind power needed to accomplish what I'd like too.
I'm working on the fast lane, slow lane thing. I don't pretend to understand it all, but I'm attempting to process it, ever so slowly with my dementia brain. I understand what happened to me, but still, acceptance every moment of the day has not happened yet.
March 28, 2006
On March 23, my Mom would have had another birthday. She would have been 92 this birthday, having went home to be with her God at age 90. I miss her. I know that she is in a better place, so much better than this sick, suffering world we live in but she was a very special person in my life.
She was just always there. From the womb on. There is many times a special bond between mother and son. We had that bond. A strong bond without apron strings attached.
I know that she is in Heaven, singing with the great choirs now. I hope they had a big birthday party for her with lots of candles. Someday in the not too far off distance, I too will be with her once again, celebrating life, but in a much better world.
March 29, 2006
Yesterday we went to our support meeting breakfast. What a time we had together at Cracker Barrel. Lots of good food and socialization. After some time together, we each went our separate ways.
Sharon and I gradually ended up at the ocean for about an hour. It was so peaceful and relaxing there. The time went by so quickly. I love spending time at the ocean. I took my lawn chair and set it up where I could see closely the crashing waves and hear the sounds of the ocean. The sea air was fresh and I just sat there taking it all in.
I was there at low tide which began at 2:30 PM. The high tide had been at 8:28 that morning. I prefer high tide but even low tide is refreshing. The water temperature was 64 degrees, a little to cool for me yet, however there were many in the ocean water. A near by sign at the life guard station said that the water was of sorted conditions, were moderate with some rip currents. Life guards were on duty from 9 AM to 5 PM.
While at the beach, I saw several large fish in the distance waters and watched sea seagulls and pelicans in v formation gently riding air currents.
We were at Ormond Beach, a Vilosia County Beach near Daytona area.
A family sitting near by were spending some time together. Mom and Dad were reading and at times sleeping. A young daughter, a little over toddler stage was busy with her sand bucket playing, and would occasionally get into the small waves. A sand castle was near by. Her older brothers kept a good eye on her for some time. Then, wanting to go out into deeper waves to play themselves, Dad was called for duty with the youngster. The family reminded me of my youngest daughter, Mary Ann and her family who like to visit a beach on occasion.
Walkers and joggers went by me along with a biker and some individuals riding in a gulf cart. Some were just sitting there catching some rays of sun while others were busy with other beach activities.
One thing that caught my eye was that two handicapped individuals were wheeled onto the beach in large plastic type wheel chairs. They had large wheels that would not get suck in the sand and were large enough for protection for the individuals. I imagined that these were rented from near by. One individual was wheeled to the edge of the incoming waves and the other was actually taken out into small waves under watchful eye. I thought to myself how nice it was that someone cared enough to do this kind act for another. Our world is filled with individuals doing random acts of kindness. These individuals make the world a better place. What a way to spend some time for Sharon and I before retuning home from our journey. We'll be back.
March 30, 2006
I've been reading a book called Soul Survivor by Philip Yancey. Philip is an author that has challenged me to think beyond the surface of things again and again. I've read several of his books now and have enjoyed each one.
This book speaks about some of his Mentors who helped his faith survive. He says, "So much of history careens along in plurality-poor vs. rich, white vs. black, Catholic vs. Protestants, Muslim vs. Hindu, Israeli vs. Arab and religion raising one more barrier." He went onto say that "a big danger is for us to follow the people we are opposing." "They call us names, so we call them names." The names we use may be ignorant, brainwashed, duped or hysterical, poor-white, or consumed by hate. He ask that we not put others into one all-inclusive category, as many others do. The danger of the "us or them" mentality can take over. We run the danger of joining ranks with the very people we oppose.
It's so easy to use words to describe another individual or group that we disagree with, don't understand or don't care to understand.It's too easy to label.Tolerence is lacking.
In the newspapers I read constantly of terrorist, unpatriotic, un-American, trators,infidels,fanatics, enemies. Have we ever thought the other side might call us the same? These labels are from intelligent, caring people? At times people of faith?
In the past there were savages, heretics, illiterates, unschooled, hicks, lowlife, white trash or trailer trash, witches, holly rollers, heathen, fanatics, and sinners, Nazi's, the red man, savages, White's, Jews, Japs and Niggers, boy and oh so many additional names for various ethnic groups. Of course there was the name calling of girl and tom boy as well as sissy. I question how much harm these terms have caused? How much divison and hatered?
Today there are the liberals and the conservatives or neo-conservatives. There's the Christian and non Christian. The Atheist and the Agnostics. The Gays, dope and crack heads, the druggie or addicts, the drunk or alcoholic, the slut or prostitute. The rebel or the punk. White trash or trailer trash. Hate speech and name calling is all to prevalent. This brings about pain, hardship and misunderstanding and hard feelings.
In the North and the South there are the Yankees and the Rednecks. Lately I've been convicted of calling individuals in rural Florida, Rednecks. All because I don't like the actions or way of life of some, I begin calling them names. I'm ashamed of myself and doing my best to break myself of this bad habit and try to understand where other's are coming from.
We are all God's children, no matter what color, size or shape, how educated or how uneducated, poor and rich, liberals and conservatives, Democrats and Republicans, Catholics, Christians and Jews, Muslims and Atheists. Those that are Gay or not Gay. Those that have had abortions and those that have a baby out of wedlock. These are God's children, created by Him and in His image They have that special spark of life in them and have value. They have a soul that will never die.
Each of us are special and unique. Each of us need the love and acceptance of others. They may not always agree with each other but we need to respect each other. Respect to me is more than mere toleration. It allows the dignity of another.
We speak of someone being an old person, senile, ignorant, different, strange, odd, unusual, not all there, unglued, one with something missing, stupid, crazy, an idiot or dummy rather than attempting to understand one's situation, disease or difficulty.
By labeling individuals or groups of individuals we are dishonoring them. Due to being brought up differently, having another faith or being American does not give us the right to belittle others. Name calling is not becoming. I am not always into being politically proper, however, this does not allow me room to be ill mannered with and about others.
I find that much of name calling and labels comes from misunderstanding, lack of education many times and fear. At times it comes from prejudice and hate and things taught and passed on to us. These things have always occurred, it seems, but this is no reason for them to continue. Individually we can make a choice to do something about it. We can change ourselves and attempt to change the society in which we live. We can stop the name calling and prejudice ourselves and teach our children and grandchildren that this in not accepted and why. Personally I am looking at ways I can change my thoughts, behavior and names for individuals and group of individuals. Dementia at times make me dig a little more and try to think beyond the surface.Those of us with dementia must work harder for information and change, it seems.It's more difficult to undersand and remember. Dementia gives me a lot of time on my hands to explore some of my thoughts, feelings and attitudes.There are moments I can't remember much and then there are other moments which I have come to enjoy when I can explore the real me with hopes of what I can become. While I'm still able, I want to understand myself and how I relate to the world.By understanding I want to make it a better world.
March 31, 2006
Have you ever wondered if those our age and older use the computer? I have. I read some interesting statistics recently of our older population using the computer that I thought I would share with you. This was from the year 2005. I wonder, but then again, I wonder about lots of things but I only spend a very small amount of my time wondering.
Age 50-64 65%
Age 65-74 45%
Age 75 plus 25%
Can't remember where I found this, probably in the newspaper. I thought it was worth sharing with you. It shows that many individuals age 50 and beyond do use their computer. I guess I fit right in there. Lots of laughs. I hear so many older individuals say they can't use the computet. Well, it seems many are using them.
To lighten it up a bit I found some thoughts ...
"I can prove anything by statistics except the truth" by George Canning and...
"Statistics are no substitute for judgment" by Henry Clay
I enjoy statistics but don't always take them seriously. I want to know who wrote them and a little about that person or organization and who pays them. At least they give us something to think about.
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