June 1, 2006
Dementia and Fibromyalgia takes it's toll on both individuals suffering with the disease. Both being caregivers of each other, a great toll is also taken.
Physically, emotionally, socially, spiritually and financially, one's well being can be affected.
According to Dr. Mary Mittelman, "Alzheimer's Disease is perhaps uniquely stressful because the person you are caring for is slowing changing. You can't exactly predict how she or he is going to behave tomorrow based on the way she or he behaved today." I feel the same can be said about those who are caregiver's for Fibromyalgia individuals.
Depression is a part of both of our lives and can be very devastating.
In an article of Health News, it was said that "husbands of Fibromyalgia sufferers are in slightly poorer health, more depressed than other men."
It goes on to say that "Spouses of women with Fibromyalgia do experience more depression and loneliness, and report more stress and fatigue, than spouses of well women."
In an article on alzinfo.org, regarding Alzheimer's caregivers, it says "perhaps one of the greatest costs of Alzheimer's Disease is the physical and emotional toll.
Caregivers can have lower immune systems being more susceptible to common illnesses. They also can be more slow to heal after injuries.
One might say that the symptoms caregiver's experience can be very similar to caregiver's of both those with Alzheimer's Disease and Fibromyalgia.When a couple have these diseases, the problems that come with them can be very complicated and difficult to work with.
Education and support are necessary for caregivers to survive. It is said that long after a partner is placed or dies, caregivers continue to suffer.Preperation can make the journey much lighter for all involved with the journey.
June 2, 2006
On August 13, 1966, Sharon and I stood together before a minister as he said words something like this: Dearly beloved, we are gathered together in the sight of God, and in the presence of friends, to unite Sharon and Chip in holy matrimony.
Do you, Sharon take Chip to be your husband? Do you promise to love, honor, and obey him, forsaking all others, in sickness and in health, for richer or for poorer?
As I remember, as I looked into her beautiful eyes and smiling face, she said "yes".I answered yes also after taking the same vow.
It's been many years now, but I can almost here myself saying..."In token and pledge, with this ring I thee wed" as I gently placed that special ring on her finger. Sharon also placed a ring on my finger, as a token of our love.
It seems the words that followed were something about asking if anyone present objected to our union? This was followed by the words, "In the name of the Father, Son and Holy Spirit I now pronounce you man and wife, what God has joined together, let no man put asunder."
Then the minister said, "you may kiss now the bride." He didn't have too tell me the second time. Wow, I well remember that kiss before we hurried down the isle to begin our new life together
This was just the beginning of many years as husband, wife, as best friends, and then as caregivers for each other. We had made promises to God, to each other, also to our family and friends that had gathered together to wish us well.
The marriage ceremony was only the beginning of a life long journey into the unknown, being joined together by God Himself
Marriage can be a time that colors and affects the rest of one's life and the many that are involved with this union. Marriage can be heaven or as someone once said, it can be hell. For me, marriage is what you make it and those vows made many years ago are just as meaningful today as they were when first made. In fact, those vows are more meaningful today.
Growing old together with a person I have shared life experiences with and having been there for one another through thick and thin has been one of the most fulfilling parts of my life.
Someone said that "real love can stand the test of time."
June 3, 2006
During our wedding ceremony my brother-in-law, Paul Dear, sang a beautiful song out of the Book of Ruth in the Bible.
The words follow:
Where you go, I go;and where you live, I'll live. Your people are my people, your God is my god; where you die, I'll die, and that's where I'll be buried, so help me God-not even death itself is going to come between us!"
A commitment made is a commitment to keep.
June 4, 2006
Some years ago Sharon and I were invited to a cousin's wedding. At the reception, an interesting thing occurred. The Bride and Groom ask those in attendance to share with them what made a great marriage and or any secrets too a long marriage.
I remember the room, although filled with couples, was pretty quiet. Only a few brief comments were made to the questions.
I sat quietly by with those at the reception, not quite knowing what to say. Today, as I thought about the question ask so long ago, I came up with a scripture from the Bible found in Ephesians in the Amplified Version that says this:" Let all bitterness and indignation and wrath (passion, rage, bad temper) and resentment (anger, animosity) and quarreling (brawling, clamor, contention) and slander (evil-speaking, abusive or blasphemous language) be banished from you, with all malice (spite, ill will, or baseness of any kind)."
It goes on to say,"And become useful and helpful and kind to one another, tenderhearted (compassionate, understanding, loving-hearted), forgiving one another-readily and freely, as God in Christ forgave you."
If I had the opportunity to answer the question ask so long ago, I would probably give this scripture along with these words of my own, "live and let live." I guess these are words I've made my own. Lots of laughs.
June 5, 2006
I was just thinking about brain cramps. You know...those things that occur during waking hours when we say something or do something that we wish we hadn't said or done.
Many times on my daily journal I share with you about these times Sharon and I have. There are so many that I could make most journals into accounts of my brain cramps but I like variety and feel that you might like it too, so I force myself to think variety as I journal away.I have so many brain cramps that it would take up all my printer ink.
When I put coffee into my coffee maker and not the water, too me that's a brain cramp. When I open up the cupboard and forget what I'm looking for, that's another one. I bet you can think of many brain cramps that you or the one you are caring for has had. I know I can. If I forget them, all I have to do is go back through some old journal entries and I have enough to keep me laughing for some time.I try not too take my self too serious but many times it happens after the fact.
Dan Quale had a brain cramp some time ago. He said "Every once in a while, you let a word or phrase out and you want to catch it and bring it back. You can't do that. It's gone, gone forever."
Sounds like something I would say. Lots of laughs.
June 6, 2006
Sharon has my phoned hooked up too speed dial. It really helps me to get connected with the individual who I am calling and not a wrong number. That's until recently when I wanted to call my sister Norma in Missouri. I speed dialed her, or at least I thought I did until I heard the voice of my sister Anna in Ohio answering her phone. The first thing that came out of my mouth was that I got the wrong number. Anna immediately responded, "your kidding, aren't' you?"Of course if I was thinking, I would have never made that comment. Following this thought less statement, I went right along with her response, and we had a nice brother, sister chat. If I had been thinking, I would not have said that I had got the wrong number. Anna is an older sister and in no way would I play a joke on her or not talk too her even though I had intended to talk to my other sister, Norma. I'm not that rude, but my mouth without my brain fully engaged can make it sound like it at times.
I know that Anna has completely forgotten the whole incident long before our conversation was over, but I haven't. It was just an innocent mistake but I wonder how many unplanned innocent mistakes I make daily that I don't even realize? I speak before my mind is in gear, and even when my mind is in gear, it's not fully in gear. I do the best with what I have, but many times my best is not good enough.
Now, I don't plan on giving this a lot of thought on my part because if I did, I'd end up doing little with my life, perhaps hiding in my room and withdrawing into my shell.
There are moments when I put my food in my mouth that I think that shell would work for me, but only for a time. In the short run, it might momentarily help how I feel but in the long run, it would rob me of the life I have left and end any resemblance to a meanfinful existence for me.
I make mistakes but I refuse to give up. I refuse to quit thinking, doing, talking, serving, doing my chores and keeping my mind active in what ever way my energy allows for.
Putting my mind in gear once worked but now it's putting what' s left of my mind in gear and at times, that's not even going to happen. I walk on, not feeling guilty or worthless, keeping my head up high, maintaining my life as best that I can.
June 7, 2006
I was walking to the car along with a friend. I was looking down for some reason, I don't know why, but there it was. I spotted an old rusty nail. I couldn't just let it lay there. This was a parking lot and someone may have gotten a flat tire from it. So I picked it up, and threw it off to the side of the road, way off into a garden area where I felt sure it would not be able to find it's way back to the road. I didn't do anything great, nothing memorable, just a little hardly noticed act of kindness. It was almost an act that wasn't noticed, and that's the way I like it. I know what I did and why. That's all that counts.
Somewhere in the Bible, it mentions being our brother's keeper and loving our neighbor as we love ourselves. For me it's not always the big gifts that matter, although those are needed too, many times it's just the little random acts of kindness. The opportunities come out of no where, and we have a moment or so too act...or not too act. There have many times, I'm ashamed too say, that I have not acted. I've just walked by. It's so easy too do.
I remember an incident years ago as a social worker when at the employees entrance to our office building. He was asking for money. I thought for a minute and then I gave him a small amount for some food. One of my friends who was walking behind me noticed what I had quietly done, and began a loud discussion with others around us that I should never have given that money to that man. The reason was that he, according to her, would only go to the nearest liquor store and spend it on alcohol.
For some time I questioned myself and what I had done. Now, I can understand that I can't help everyone who asks me for money, but when I give funds to someone, I'm not responsible for what they do with it. I hope they'll do the right thing, but if they decide they need a drink or something else, that's up too them, not me.
Although I am of limited income myself, I still have more of everything, it seems than much of the world I live in. Random deeds of kindness does not have to be just money, It can be almost anything that will help the situation at the moment. Does it make a difference. Yes, I am my brother's keeper and for me, my brother consists of all who live and breath. I am no person's judge.
June 8, 2006
I was thinking about relationships and the importance of compromise. Compromise by not just one but by two. The two individuals in the relationship. When compromise is only from one side, it is not a relationship. It's a dictatorship.
A relationship is the coming together of two individuals where neither is the boss.
It's a sharing of two personalities, two individuals brought up differently, two that many times think differently. A blending of strengths and weaknesses in becoming one.
Now Sharon and I each have our own particular strengths and we both have our own unique weaknesses. We could sit around trying the control game or picking at each other, fussing and fuming, or we could sit down together, discuss our strengths and weaknesses and use them to make our relationship stronger.
We both bring something to our relationship. I decided long ago that we could work with these differences to our advantage and have peace instead of strife in our lives and home.
When it comes to dementia and Fibromyalgia couples, it's even more important that early on these differences are looked at for what they are, and used for the betterment of the relationship. It's not all about me...or all about her. It's all about us and our world round about us.
No one is alike. We are all unique beautiful creations and we can add color, strength, beauty and joy to a relationship that will endure through time, if we only use our uniqueness not as something that divides us, but as something that unites us.
We have tried both ways in our personal relationships and found that to live and let live is much more enjoyable than trying to control each other and change each other.
Relationships between others, friends and couples can be enjoyed and fulfilling when we become one, living in peace with each other.
June 9, 2006
Identity stolen. I read stories, articles and see it on the news all the time these days. Things that we never had to think about in the past, today we must think about. That's difficult especially for those of us who have difficulty thinking, barely making it through the day. There are so many other things on our minds and many things that don't even make their way into our minds.
I remember some time back in what seemed to be the mid nineties, we were informed that someone had used one of my checks. I went to the bank and was shown a check, one of my checks signed with my name, but upon close examination, it was not my signature. It was one of my checks but the writing and signature were not my hand writing. I forget how many times I had to write my name out for the bank employees to prove that someone other than myself had forged one of my personal checks. To this day we don't know how it happened. I do know that during the nineties, we were very careless with what we put into our garbage cans. It was not thought of that someone might be looking through our trash. Theft identity seemed to be just beginning.
One other time at an office I was ask if I had ever worked in a city in another county. I had never worked in that city. It was a great distance from where I lived. Then I was shown on a computer information regarding a person with my complete name and correct social security, that was wanted in that area for, if I remember correctly, working under my name and social security number, pretending to be me.
Perhaps I should have been delighted that someone wanted to be me...but I wasn't. In fact, I was rather upset about the whole mess.
Today Sharon has a shredder and shreds any papers, mail that might show our names, any numbers or information about us. Then it is discarded. I understand there is still many ways to obtain information on a person that can be used to other's advantage, illegally of course. It's hard to understand but there are those that try to make money off of us by stealing our identity. We can make the choice of not making it so easy for them by a little thought and action
A reminder for those of us who don't think as well as we once did. Make it difficult for other's to get your mail, new or old, and to get into your business, knowing that this is a different day in which we live when crooks abound.
June 10, 2006
I get so easily distracted these days. A pretty lady walks by and I'm distracted. Lots of laughs. As Billy Graham so well said, I have eyes and am not blind. It's what we do after we see a pretty lady that counts. I am allowed to admire her beauty, of course.
My focus is broken so easy. I try to force myself to concentrate and it does help, but focusing takes a lot of will power and is very draining for me. My mind just wants to wander from thought to thought, without really giving the thought much consideration. I think I spend more and more of my time day dreaming during the day and dreaming during the night. I could be startled easily by someone breaking into my silence.
Times of silence is good for me, but it tends to worry me that I'm having more and more silence and I don't want to go into silence and stay there. I have some friends with dementia that seem to almost be lost in silence and I don't want to go there.
As my discipline of mind breaks down more, I observe what's happening to me to more of a degree than some with dementia. Lewy Body Dementia tends to allow us to see more of what is happening to us, while being unable to stop it.
There are times when I want to yell out, "Stop, I want to get off now" but I am unable and the stages continue to play their silly games, going back and forth, up and down, staying with me for moments or days and then suddenly changing on me.
I wouldn't wish dementia on anyone and pray for all that have it. May God help us as the times get darker. I am not at all prepared or ready for the times of silence.
June 11, 2006
So many times I am tempted to moan and groan. To tell you how many doctor's I've been to see lately and how many are specialist. Oh, and how many tests and exams I've had including how often I must get blood work done. And then there's the long list of medications that's ever changing and ever increasing. The rashes and the coughs and how many times I have to go to the bathroom daily. Don't get me started because I won't know when to stop. I bet I can top your latest complaints. Then there's all the foods I should eat and those I shouldn't eat. The liquids I should drink and those I shouldn't and the exercise the doctor expects me to do. Oh, the list goes on and on and on.
Rosland Russell made a comment that I try to remember. It sounded like a prayer to me. She said, "seal my lips on aches and pains. They are increasing. My love of rehearsing them is becoming sweater as the years go by."
June 12, 2006
As my dementia kicks in big time, I must try to stick to the facts. Now that's not always that easy because there are times what I think are facts are close to facts or not facts at all. Now, I never deliberately lie or try to deceive but there are times I've said things that later I was told was incorrect or not quite accurate. I can only say that I do my best and not worry about the rest.
Josh Billings said "It isn't so amazing the number of things I can remember, as the things I can remember that aren't so."
And then there's Truman Capote who said, "I remember things the way they should have been." Lots of laughs
My memory might not be one hundred percent, totally correct every moment of the day, but I speak out of my memory. How else can one speak? This does not keep me from speaking or telling my story but it makes me a little more careful about what I say. At times it is good to check out my memory with others and not be so absolutely, positively certain that ... that's the way it was. This thought brings with it a little humility where once perhaps there was a little too much pride. I no longer have the ability to be so sure of myself. With this dementia stuff I have, I just must remember that I may have to eat my words, so I do my best to keep them tasty, just in case.
June 13, 2006
I have observed in the day in which I live, the more noise, the louder it is, the more it is liked by many. It's either music, TV, computer with the sound up or talking. I can hear the cars roaring by my home, gunning their motors, loud mufflers and their boom boxes thumping loudly.The noise comes right through the walls of our home. I live in the country and I can tell when neighbors are home, leaving for work or returning by the noise level.
Our nation was once fairly quiet but those days are long gone. Now, it seems people are afraid of quiet.
I heard it said that the average person has 60,000 thoughts racing through their heads a day. I'm sure that those of us with dementia have considerably less than that. Racing thoughts does not make for quiet. In my head and heart I long to return to those days when quiet was the norm.
Remember the times before loud cars that pack the highways of life? Remember when Mother's would say, now be quiet and mean it? Remember how the librarians would insist on quiet? Be still meant quiet...silence resulting in peace.
John Dyer encourages us to embrace silence. I need it, practice it, seek it. Ah...it's so good to have quiet on occasion.
I'm not afraid of quiet. We've had friends come to visit our home and tell us it was quiet and peaceful here. For me that's a compliment and it doesn't just happen by accident. If one makes the effort quiet will come like a gentle cloud filling your life and home. Quiet can become a good friend.
June 14, 2006
This is flag day here in America. We have three small flags on the outside of the home blowing in the gentle breeze. Ah, how proud they make me feel. They represent America, land of my birth, land where I have lived and wandered my whole life. That old flag represents so much to me. American has given much to me and my family for which I'm very appreciative.
I want to give the words of an old song called "You're a Grand Old Flag" by George M. Cohan.
You're a grand old flag,
You're a high flying flag
And forever in peace may you wave.
You're the emblem of
The land I love.
The home of the free and the brave.
Ev'ry heart beats true
'neath the Red, White and Blue,
Where there's never a boast or brag.
Should auld acquaintance be forgot,
Keep your eye on the grand old flag.
June 15, 2006
When does one get old? Ask a child and they'll tell you somewhere after age 25. Some think that old begins at 45, or at least negative changes begin at around that age. Some say 50...some try to stay 50, lots of laughs, and then there's those that say it's some where in the 60's. Some say there never getting old but it sort of creeps up on us.
When does someone need protection? We are our brother's keeper if we know them or not. We are the eyes, ears, and heart for those unable to protect themselves from harm's way.
I just read an article in the Florida-Times Union about a caregiver being charged in a bleach attack. It seems the caregiver faces felony charges, charges of aggravated abuse of a disabled adult, after being accused of throwing bleach on a woman, age 53 with multiple sclerosis after the woman urinated on herself. The woman has limited use of her left side and minimal use of her right side and was admitted to a hospital, suffering from dehydration and anemia.
For eleven of my twenty some years of employment as licensed social work for the state of Ohio, I worked with elderly that was abused, neglected or exploited. There were several of us that were kept busy evaluating senior abuse cases in our country in which I worked.
We don't hear enough about adult abuse. I rarely see in the newspapers here in Florida anything about adult abuse and yet I know it's here. Florida is one of the most populous states in America for elders. Elder abuse is significant thought under reported. It's a terrible problem here in America and I would think world wide.
It's reported that as many as five million elderly Americans are abused yearly and that as little as ten percent of the crimes are reported.
America has an elder population of about 34 million and it is rapidly growing. By the year 2020 there will be 62 million persons over the age of 65. The Baby Boomers, born 1946-1964, I missed it by a year, will number 75 million. The fastest growing segment of our population are those over 85 years old. How many of those are at risk living at home alone with the help of a caregiver, living with a caregiver or in a nursing home, assisted living or group home? Over 70 percent of person's with Alzheimer's Disease live at home. I am one of them.
I could tell you some awful stories of how elderly are treated by mates, family, friends, neighbors and strangers. Many of these cases or difficult to get out of my mind. I sat many times in probate court defending their rights. I worked long hours on obtaining help for them. Some of these situations may never leave my heart and mind.
The National Center on Elder abuse defines elder abuse as any knowing, intentional or neglect act by a caregiver or any other person that causes harm or a serious risk of harm to a vulnerable adult. This extends into nursing homes and other group settings as well.
If you think someone is being abused, contact the Elder Abuse Hot Line at: 1800-752-6200. Please call, for the sake of the elderly and those who can't care for or protect themselves.
June 16, 2006
I was thinking that my pace of late, has slowed down. I see a difference in me. I see changes. Many times with Alzheimer's Disease, one does not see their pace but for so many of us with Lewy Body Dementia, we can see our pace.
Henry David Thoreau once said,"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away."
Since I was young I wasn't worried about peer pressure as so many were. Some seem to be preoccupied with it. My pace was different from many my age and still is today.
Long ago I heard a different drummer. It was music in my ear and I stepped to the music I heard. I heard the sounds of the country when I was quite young. I enjoyed growing up in the country and near small towns. I was a country boy and to some extent, still am today. As I became a mid to older teenager, I heard the drum of God calling me to distant places of education and ministry. As I listened closely to the beat, it the sounds of music seemed to linger as I danced through employment, education and ministry to others. I still long to continue on.
That drum beat still lingers on today. I can hear it, even as the distractions of dementia fill my life. There are days when I must listen a little closer to hear the music, but I hear it. I continue to dance to the music that gives rhythm and meaning to my life as I follow the sound of the drum and it's beautiful music of life. I'm hearing the same drummer as I did at younger years in my life as I sway to the beat of life.
June 17, 2006
Two things I wanted to share with you today. One is that I usually don't know what date it is. The other one is that I get behind on my reading quickly, especially with the newspapers. I receive two of them. Now between these two problems, and a misquote from our local newspaper, something happened recently.
The title of the article in the newspaper was Juneteenth Celebration. It was for a weekend celebration of the freeing of the slaves in 1863 during the Civil War. I remember thinking about the Celebration name several times thinking that it sounded strange. I never made it though that days newspaper and put it aside for later. Later was not until the following week and in my confusion, I thought the celebration was that coming weekend. Sharon had not looked at the article that I had cut out of the newspaper. That weekend, we headed to the celebration. Arriving in the area where it was to be held, we were surprised. There was no celebration going on. I showed Sharon the newspaper article I had brought with me. She looked at the title and soon came up with a reasonable explanation for my mistake. Our local newspaper rather than print, June 10th Celebration, they had printed it as Juneteenth Celebration which had caused an uncertainty when I first saw it, but I did not share this uncertainty with my Sharon. June, 10th was on the previous Saturday and really the celebration was on June 9th and the 10th, a week before we tried to attend. By rereading the newspaper a few days later than it was printed, I thought it was for the new up and coming weekend.
Oh well...Just goes to show how a little thing can cause a lot of confusion on my part. I get confused rather easily, I would say...
June 18, 2006
I was thinking about what is going on in America today and what our history records as having happened in our past.
I am saddened by the state of affairs and went onto my computer to The Declaration of Independence. Although I have heard these words before, I wanted to hear them again. They sound like music to my ears. "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of happiness."
Of course there is much more there to read and think about. The question that comes to me is are we as a nation living up to our Constitution? Do our national leaders live up to our Constitution?
On the freeing of the slaves that was celebrated recently, in our hearts and minds,have they really been freed?
Do all races here in America have certain God given rights which include among them the pursuit of Life, Liberty and the pursuit of happiness?
I've lived here in the South for about four years now. I am discovering a difference between the way races are treated here. In far too many quarters the Confederate flag is still flying high and along with it the prejudice that it stood for is still very evident. America still has a long way to go with the equal treatment of each other.
June 19, 2006
I was thinking about what I journal about. Many times I notice that I stray from my Lewy Body Dementia. I questioned myself if I should let my mind wander like it does, or try to bring it back to the issue of dementia. My mind is not very disciplined these days and many times I lack what it takes to focus and keep on the road. I guess my answer to the question I ask myself, there I go again, talking to myself.....lots of laughs, my life is so much more than dementia. My joinery takes me down many roads, as it always has, and dementia so far continues to allow me to have many interests. It is different now with dementia. Much different. I have more u turns, stop signs, road blocks and detours. I have many starts and stops. I forget where I'm going at times. I at times go the scenic route, not the direct route. I have to ask for directions more, even though I have a map with me. Being a male, I don't always enjoy asking for help. I'd rather stay lost for a time. I could get to my destination a lot faster than I do, but I would miss so much if I stayed at Dementiavillle. My roads go through that town, circle around it, get lost in it at times, but I'm glad I'm still able to get beyond it, at least for some fleeting moments.
When I go through religion, faith, ethics, politics, family, wife, caregiver issues, my issues, friends, that's where I live. I have many interests and loves and perhaps...perhaps that is a part of what keeps me going on my journey. These are life time interests. Some of my interests have disappeared, some have lessened and some have taken on new meaning. In fact, dementia has casued some new interests as I go over my disease, under it and around it to try and find a way to keep on keeping on and continue with a worth while life. My journey goes on and the road seems long at times. At other times, I look back the road and it seems like it's been a short journey. I guess it's all in the view and perhaps how your looking at it. Attitude might play a part too.
I hope you enjoy traveling with me on my journey. I know I don't mind being alone, but I sure enjoy your company and support along the way
June 20, 2006
I am upset. My voice is getting weaker. Communication is such an important part of my life. I just enjoy talking and sharing, which assists me in being part of those round about me. It all began about three years after my initial diagnoses of the early stages of Alzheimer's Disease. That was about six years ago. My voice started to become weak. It was a gradual but noticeable decline. I went to an ear, nose and throat specialist and was told that there was no reason for my speech impairment. I then went to a speech specialist who again after testing told me that there was no reason for my speech to be impaired. In addition she mentioned that my dementia could be affecting my voice.
After doing some research and talking with some Alzheimer's Disease leaders, I was told about a store in Cleveland Ohio that sold equipment for those with voice impairment. Up on a visit to the store I was shown equipment that would magnify my voice. It's a chatter vox or a voice vox. It's operated by batteries in a case attached to a belt. Attached to the vox box are headphones and an amplifier to speak into.
Approximately four years ago I gave up using the voice vox after having used it for some time. Perhaps pride was involved. I'm a pretty independent person.
Some time ago, my voice took a turn for the worse and has weakened ever since. Many cannot understand what I am trying to say in person, in groups and on the telephone. It's embarrassing to me and causing me to speak less when I really have something I want to say or to add to what is being said. At times other's misunderstand what I have said. I have a need to vocalize my thoughts, the few I can get together, and to stop talking is not with in me. It would be a terrible loss and I've had enough losses. A fear that I have is completely losing my voice in time.
Although it takes me a lot of energy and time to get my thoughts together, making blunders as I go, I still have a great need to talk and to be understood.
Doing research on Lewy Body Dementia, I have discovered that having a weak voice is part of my disease. This information is useful for me in coming to terms with my weak voice.
Sharon and I rediscovered where the vox box had been stored away in our home, and are going to give it some practice runs so that I can again use it. I want this to work for me and my pride has to be replaced with present reality and need. Pride is such an ugly, controlling feeling. Feeling self conscious is not easy for me to deal with either. Perhaps now with my dementia having a greater grip on my life and with Sharon's support I can use this equipment to my advantage again, with more assurance that I'm not drawing undue and unwanted attention to myself.
June 21, 2006
I think it was yesterday when Sharon noticed and then mentioned some bee activity around the area of our mail box. I heard it, but I don't know that it went much further than my ears. I didn't give much thought to what she had said.
Earlier today I went out to get our daily newspaper out of our newspaper box which is right next to our mail box. I had no sooner stuck my hand in the box than I felt some pain on two finders. Although I have not been stung in years by a bee, this was the real thing. Quickly removing my hand, I noticed a finger swelling up. Actually I had been stung on two fingers, but only one finger swelled up on me.
I quickly went into our home trying to find a quick remedy for the pain. I don't know how many solutions and sprays we put on my fingers, but in a small amount of time, the pain was gone.
It was time for revenge. I went to our cupboard and found some wasp spray that was stored there. I returned to the newspaper box, a little more quiet and carefully this time, aimed my wasp spray from a safe distance, and soaked what appeared to be a small yellow jacket nest in the back of the box. I think I got them all. At least, those that were on the nest at the moment.
I got to thinking. If I had only paid attention to Sharon's warning yesterday and followed through by checking the area in which she had spotted some bee activity, this would not have happened. I would have likely discovered the bee nest, sprayed it with some wasp spray and kept myself from being stung.
Men ... just don't pay attention, someone once said. Perhaps there's some truth to what someone once said.
June 22, 2006
Life is full of challenges for all of us. Some less, some more, but as a part of the human family, were going to have challenges.
There's been periods in my life when I seemed to float along without many if any challenges and then out of no where, all of a sudden, there they were.
Challenges often come with dementia, in fact, before the diagnoses. It helps to plan as much as one can before hand. Planning might make the challenge a bit easier, but the challenge doesn't usually disappear. Life, it seems, is full of challenges.
I think how one handles challenges might have been taught to us by parents ,grandparetns, family or caregiver's. As life went on we were taught skills to face challenges. Church, clubs,organizations and self help literature taught us how to handle challenges.
I think these challenges of life reveal our character or lack of character. "Challenges reveal character. Challenges don't build character." As challenges come our way, I try to drawl from my character." Character is your most prised possession." The challenge does not usually disappear without a fight, but the values of character sure can help greatly with that fight.
June 23, 2006
I was reading the Blondie cartoon yesterday, I think. I won't squabble over what day it was for sure. It was recent, I know that for certain. Dagwood, one of my favorite characters is carrying a load of paper work into the office of his boss, Mr. Dithers. Dagwood tells Mr. Dithers that "this is to much work for one person to do" and ask that Mr. Dithers "be reasonable." Mr. Dithers looks at Dagwood with his arms crossed and says, "I can't." He goes on to say "that would be out of character for me."
What is character for me? When am I in character and when am I out of character?
Sharon calls me a character at times. Lots of laughs. The Boy Scots of America teach character. A large sign in our town of Palatka says that "Character Counts." Employers look for individuals of character. I look for character in friendships.
It got me a thinking...What is character? An online dictionary says that character is "the combination of qualities or features that distinguishes a person, group or thing from another."
There are six pillars of character. They are trustworthiness, respect, responsibility, fairness, caring, citizenship.
The Scout Law is a summary of character issues that scouts pledge to. Trustworthy., loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean and reverent
I hope that other's can say of me that I was a man of character. Life is so short and death..it it's certain. What will be said of us?
June 24, 2006
As my voice weakens more and more people ask me to repeat what I said to them. Some times I can repeat it but many times I have to say that I probably told them something but I have no idea what is was. For me this is very embarrassing. I could just stop talking but I refuse to run and hide. I want to understand what's happening to me. I know it is a symptom of my disease but I have a need to know more about it.
After all that work on getting my thought together and out, it's gone just like that. The thought completely disappeared on many occasions. For some time, it seemed that afternoon was the most difficult time for me to be understood by others, but more than not, I wake up with this difficulty with my speech.
It's not only difficult for me, it's difficult for others. Some stay clear of me, but I still have loyal family members and friends that stick with me and try to understand my situation.
I've looked at the Lewy Body Dementia symptoms list and it says weak voice as one of them.
I've tried to do my homework and research into this speech impairment problem I have and I have discovered that little information is available on the subject.
As the condition worsens, it's causing a new set of problems for me to work with and so far, I'm not doing very good. It's so frustrating for me. If anyone discovers any information or material available on this disturbing symptom of Lewy Body Dementia, please share it with me. I have a need to understand what's happening and what I can look forward to in the near future.
June 25, 2006
Can there be a lighter side to dementia? Can one laugh at some of the strange things that happen as life goes on for us?
Friedrich Neitzsche said "the advantage of having a bad memory is that you can enjoy the same good things several times."
There have been times when I have done something completely out of character for me like call the micro wave the telephone. When Sharon notices what I've said, at times I will comment....did I say that? Then we both have a laugh or so.
Taking life to serious or oneself to serious can rob all the joy our of living. Dementia is serious but there are some light sides to it and we need to find the light sides. I think we could even make light sides.
I never want to laugh at someone but I will laugh with someone. There's a difference. Keeping it light
During our Alzheimer's Support meeting, we usually laugh many times. In the next room is the caregiver's and we survivors will hear them laughing and it makes me feel good. I think it makes the caregiver's feel good also.
Laughter is good medicine for each of us and when we make room in our daily lives for laughter, our load can be lighter and we can offer more to each other.
June 26, 2006
I'm still thinking about laughter. We can laugh together and then we can laugh at ourselves.
Ethel Barrymore said "you grow up the day you have your first real laugh at yourself." I think that's something that I can apply to my own life.
The other day I was upset. I had made a phone call to an office, asking for some information. I know my voice is weak and some may think it's a crank call, but in the back ground I heard lots of laughter. Now, being the sensitive man I now am, I thought that they were laughing at my voice. I over reacted and got angry about it. They could have been laughing about anything. There's some humorous things that happen in an office that one would laugh about. I know. I worked in an office setting for many years but I'm becoming overly sensitive and second guessing others.
I think it's time that I take my life issues a little less serious. My emotions seem to be at an all time high right now and I need to begin laughing ...laughing at myself, laughing at things I find funny. Maybe even laughing at things that aren't so funny. Being overly sensitive is no fun for me or those that are around me. On the other hand, laughter is contagious. It makes one feel good as well as others.
I'm not there yet, but this is an area I have to remember to work on.
My sister Norma emails me lots of good jokes. They are funny and make me laugh. I read the comics each day and laugh. I also look in the mirror each day, usually more than once. That should be cause for laughter. A caregiver and friends can bring laughter to us. If I look for it, I'll find it and it will help me not be as serious about life.
June 27, 2006
For those with dementia, caregivers and many times the family, our lives have been turned upside down. In many areas there is no good way to correct what has happened. We just have to make the best of what has happened. It's no one's fault. The Bible says that it rains on everyone, good and bad. We didn't cause it and could not have prevented it. Oh, I know that articles come out on occasion on how to prevent dementia in the newspaper, magazines, books, TV and emails. One can find whole lists. I often get advertisements on vitamins and minerals that one can take to prevent dementia. Also on books I can order that will right my upside down world. There are many things mentioned that are worth trying to do or take but one must be very careful knowing that these are usually just someone's ideas and many times a salesmen is trying to sell you something. I want to be aware of the latest medical information on dementia, but also think about it hard and long before acting, many times seeking advice from others.
Still, trying to stay healthy all through life is good advice, I think. Think right, eat right, sit right, be right. On being right, I think I'm a little left of center. The advice is overwhelming at times.
I read email posts from those who go from doctor to doctor. They try various types of medication and have every test known to the medical field. I am not one of them. I believe in doctors but with limited energy and income, I refuse to spend the rest of my life running here and there, having my hopes built up and then dashed again and again. I have a good doctor who I trust. I am on medication that many of us are on. If my doctor refers me to a specialist I will usually go, attempting to get the specialist and my doctor to work together on my behalf. This is usually more difficult than one would think.
The bottom line is that I have been diagnosed with dementia and now I must live with it the best I can. Hopefully my family can do the same. Our lives will never quite be the same again, but life will go on and we will survive. We are not victims but survivors. Personally I plan to keep my life as uncomplicated and simple as possible. That's something that I strive for in every area of my life.
June 28, 2006
I was thinking about hope. This is something that I have and try to share with others. Hope probably means different things to different people. I like an anonymous quote I read on hope. "Two people looked out from afar. One saw mud. The other saw a star."
Hope is to desire with expectation of obtaining; wish. To cherish a desire. To have confidence. To trust or imagine.
As a person of faith my hope is built on nothing less than Jesus and His words. My hope is built on prayer. It is built on the goodness of mankind. My hope is built on a brighter, better tomorrow. My hope is built on trust. My hope is built on change, My hope is, and as long as I have hope, I can face today and tomorrow, whatever it might bring my way.
June 29, 2006
Father's Day has come and gone. My two faithful daughters stopped by our home with cards and gifts. The nicest part of Father's Day for me was not the cards or the gifts, but my daughter's presence. The fact that they made the effort to spend some time with me, although I know they are very busy working and raising a family themselves.
I value my time with my children. I know this is a busy time of their lives so whenever they take the time to come and be with me, it's special time. I drop what I'm doing and they have my full undivided attention.
I wasn't a perfect father. Who is? I made a lot of mistakes both personally and with parenting as I endeavored to provide for my children that which I had no class or roadmap for. My parent's were less than perfect parents but they loved me. The older I get the more I understand how difficult there job of parenting really was and many times why they did or said what they did or said. I respect them. What ever I am today began with my home and my parents.
I was thinking about how it would be to be a perfect father. The only perfect father I can think of is God. Although my earthly father has gone on, I still have a father who is a parent to me. I was thinking about this father and who He is? What is He like? There are six personality traits of God....
He is Knowable.
He is Approachable.
He is Creative.
He is Forgiving.
He is Honest.
He is Capable.
This Father of mine is always available to me. He drops everything when I come to Him, gives me all his attention and holds me ever so tightly. He knows everything about me and yet He loves me and forgives me. He desires my time with Him and I look forward to my time with Him.
I have a love hate relationship with my computer. At one time I appreciate it, at times I take it for granted, and at other times I'm ready to throw it out the window.
I expect perfection from my computer.
In my own personal life, I am less than perfect. I have a long way to go to perfection and strive but will never reach that mark. I don't expect perfection from myself, but I do from my computer.
My wife, family and friends are less than perfect. I do not have such high expectations from them. I believe in live and let live, but not with my computer.
If I can be so rigid with my expectations with my computer who is not alive, perhaps I should look a little closer at my expectations I have for myself and others who are alive. I think it's a human thing to have expectations. Perhaps I should make it more of a personal thing, and then not be my own worst enemy but give my self a little room for all my imperfections. Knowing the only one perfect is God, sometimes my expectations can be out of line with myself and those that have to put up with me.
June 30, 2006
I have high expectations of my computer. I want my computer to work for me and not to take very long in responding to my requests. I want my computer to do what I want, where I want, no matter what I want and to always be correct.
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