October 1, 2006
Sharon and I are dog sitting for some friend's, Charlene and Charlie in our home. The dog is a schnauzer named Haley. I constantly forget her name but this is at least the third time that we have kept her for her owners. We really enjoy these times...just a day or two usually. After the first time with Haley, we have ask Charlene that if and when they need a dog sitter, to please contact us and we would be more than happy to care for her.
Haley is quite the baby. She's about six or seven years old but you'd never know it. Her personality is much different than one would expect of a schnauzer. One can tell she has had good care and lots of TLC. We do our best to provide the same during her visit with us.
Since we have decided there is no way we can own and care for a dog ourselves, Haley is our dog fix that works out perfectly for our situation. I was raised with a dog and have always enjoyed them
I enjoy playing with her, watching her and taking her out occasionally during the day. She has a leash that makes it easy for me to walk her outside.
For the next couple of days, Sharon and I will both be enjoying Ms. Haley.
October 2, 2006
This is the second journal I've been up to writing since my last one on September 15. Sorry bout that. I just could not make myself want to do it, as someone has said. I seriously thought the days for journaling may be over for me but this morning, which is really October 13, the urge to journal came again. It's not back by a long shot, but it's beginning to come back.Journaling is far from easy for me, but it is worth my time and energy when I do it.I want to thank those who have taken the time to send me a computer note urging me to continue journaling.Encouragement is so important to both Sharon and I. I'm on a long good bye and it is becoming more and more difficult for both of us.
When I begin this month's journaling, I dated it October 1, as you can see. This is not to deceive by any means, just a way for me to try to keep track of my journaling. Poor Tay, my webmaster. Even with this method, at times I miss sending her some journal entries, although I have made copies for myself, indicating to me that I have sent them to Ms. Tay. There are other mistakes I make as well., like forgetting to make a copy for myself before sending it off to Ms. Tay. Fortunately for me Ms. Tay has a good heart for those of us with dementia, and especially me, and between her and my wife Sharon, they figure out what I did wrong or missed.
There will be days even in the past that I was unable to journal for what ever reason, but I forced myself, thinking it was good for me, which it really was, and thinking that by my sharing my thoughts, it might inspire and give other's hope. There are so many of you that have written me notes by computer, encouraging me on, saying nice things that helped to build my confidence etc., and then there were many that ask questions, and that I feel that perhaps, in some small way, I was able to help. Bringing hope to myself as well as others has kept me journaling with some short sabbatical leaves along the way. Lots of laughs. Please don't give up on me yet and should I have to have days that I miss journaling now, due to my deterioration, I hope you'll understand. If I am forced to stop my journaling someday, I hope you will understand and keep in contact with me, as it means much to me. Either I, Sharon or Tay will inform you when and if that time comes. IF my journal entries stop for a time, please check back. It takes me time to journal and time for Ms. Tay to get them posted as she so nicely does for me. Family and friends that follow me on my journey are very special individuals and are deeply appreciated.
October 3, 2006
My brother, Bill is ill and in the hospital. Bill has Lewy Body Dementia which I possible have also. I was very concerned about my brother and sent out many prayer requests to some of my computer friends and churches. I know that through prayer, conditions can change outside and inside of us. The notes of concern and of those that promised to pray for my brother that I received was uplifting to me and made me feel so good inside.
I believe in prayer and have since I was old enough to know about prayer. I don't believe that God is a Santa Claus sitting up there somewhere but I believe that when we pray, He hears us and will answer according to His plans for us. I think He likes to talk to us not only when we have a need, but on the same level as a child going to his father to just talk to him about the things on his mind and in his heart. That's the kind of relationship that I have with the Father. When things are good and when things are bad. And all the times in between. It's a very personal thing for me, a private thing, but a thing I do daily or more often just to share and get to know the One who created us. I'm sure there are occasions that I forget but when I remember, I'm not ashamed or afraid to go to the One who cares so much about us and I like to journal about the things that make me who I am. The things that count in my life as well as thoughts that come and go almost as quick. Lots of laughs.
Prayer is something everyone can do regardless of who they are. God sees beyond our words and knows our hearts. He knows us better than we know ourselves. The soul laid bare before Him. What a thought. Prayer is not just for the very religious or those that think they are. It's part of an honest, open communication with the One who loves us most. Prayer can be for everyone.
October 4, 2006
I just took another psyiatric evaluation. A series of questions, puzzles and drawing pictures plus remembering things told to you is supposed to show a neurologist or counselor the present condition of a person. It had been probably three years since I took the last evaluation and I've had at least two other evaluations in the years before that. They bring up bad memories for me and I resist taking them. They last for hours with a few brief breaks in between the sessions. This was to be the fourth evaluation for me.
I find them to be very stressful. I do not feel that they actually show the true me because I change moment by moment and have good days and bad days. I also feel that having to answer a question if I remember the answer or not does not show the true status of an individual.
When I have said that I don't know an answer I am told to just do my best and give an answer. Now, how accurate is that, I ask you?
Well, I hope this was my last test. I did well on it and according to the "professionals" I am just about where I was the last time I took this series of tests. I think those words are supposed to make me feel good, and perhaps they should, but Sharon and I both know how I have changed over the years, over one year. She can see the change in me, other's can see the change in me, I can see the change in me and it's not for the better but for the worse. Because the professionals are only with me for a short time, it is difficult, very difficult for them to know where I'm at with my dementia and how I have changed in oh, so many areas of my life.
I guess psy evaluations are a starting place for those of us with dementia, but after a while they pretty much become meaningless. If accuracy is what they are looking for, then more than these tests needs to be looked at. They need to live with us for a time.
October 5, 2006
There are those that have accused me of being a talker. Having much to say and some of it being needless. That I have difficulty making a point. That I play ring around the rosy with my words. Some of the other kind comments and innuendo's I have forgotten.
For being a very quiet, withdrawn, shy boy as a youngster and into my teens, I must admit I've learned along the way that I enjoy talking. Just sharing with others. In my family there were talkers and then there were those that were quiet. I was a late blooming talker.
Now, I appreciate quiet individuals and feel that I am much of the time, but when something comes to my mind, a passing thought, many times I decide to share it with those near by me, those close to me. I do my best to be mindful of their time and tolerant of their value system. I tend to watch for facial expressions. I also realize that some do not want to get to know me and couldn't care less what I think, feel or believe. I do try to be sensitive, I'm that sort of guy, lol, with what I say, how I say it and to who I say it to. I do the best to use the manners my mama taught me.
There are times I can hold my tongue and there are times that I have to bite my tongue. I usually know the difference in the times and do my best to distinguish if other's are wanting to communicate or not. Of course I can usually understand or sense when one cares to talk but there's always going to be a few slips here and there. One thing that I do is try to always give other's a chance to speak to me also and I try to really listen to what their saying.
I enjoy talking. Find it stimulating, educational, fun and as one of my favorite professors at Columbus State College would say over and over, "if you care, you will share." Dr Wilma Parr coined this phrase to the point that many years later, it still lingers somewhere in my mind and guides me.
Sharon unlike myself is a very quiet person. Some times opposites attract and sometimes opposites destroy. We work on our relationship, making our many differences attract, drawing us together and teaching us diversity and sensitivity to each other. Neither of us need to give up our personalities, strengths or weaknesses unless we chose. We try to blend them together to make our relationship together even stronger.
To prove to you that I can be brief and not take up much of your time, just look at my last journal entry. I think it was three brief paragraphs with one of them only being two sentences. Wow. What a feat for me. I can be brief...I can, if I really work on it, but I do like to talk and these days unless I say what I'm a thinking quickly, the brief thought is lost, and we can have that now, can we? Let the conversation begin.
October 6, 2006
I do my best to correct my spelling mistakes by my computer spell check. Even then sometimes a few of the words look incorrect but my friend, if the spell check cannot spell correctly for me, I don't know what to do about it, so I send my journal along to my webmaster, Ms Tay anyway.
I could spend hours looking words up in the dictionary, sitting on a shelf close to my computer, and there have been times that I have opened the pages in search of a word, but it's time consuming, something I have little or no interest in doing, and therefore, I count on my spell check to be correct.
If you find a word here or there that is spelled incorrectly, please forgive me, knowing that I do have a few limitations and that this just may be one of them....
I apologize for any and all misspelled words and promise that I will do my best, with the needed help for my computer spell check, to make my journals as spelling correct as I can make them. Lots of laghs, or is that laughs?
October 7, 2006
One of the things about Lewy Body Dementia that differs from Alzheimer's Disease is that we understand too much. Many of us know what's happening to us and do to much for the likening of many individuals who just can't seem to understand. Perhaps it's a mixture of being able to understand and to accept.
There are those that either over estimate where were at and what we can do or underestimate where were at and what we can do. Some seem to fluctuate from one extreme to another. One of the reasons could be that we don't seem to stay the same, going back and forth from moment to moment, day to day. And then there's the look thing. We don't look sick or meet the old qualifications or expectations for what one with dementia should look like or be doing. For some strange reasoning in our society, the image of someone staring off into space, perhaps almost bed fast, mumbling to themselves is the image in many individuals mind of a dementia victim. That's why I think it is silly to set expectations for us or standards that we should meet according to a list or an individual. We just aren't going to meet those expectations or standards much of the time if any, and I don't mean to sound or be unkind. Were usually not trying to be difficult. I speak of we, because I've known many with dementia personally and have spoke with them on many of these levels that I am discussing. I can't understand my disease, doctors can't understand my disease, no matter what one might read and the newest research and discoveries we hear about, nor can our caregiver's, family and friends who know us the best. It's sad for them, I know it is for me, but I can't change it and have no intention of worrying about it. It's beyond my control, understanding and imagination much of the time. It can be frustrating for all concerned, including me. Just think of it. To know things are happening to oneself but to be unable to control it, fix it or change it. In my distant past I have been somewhat in control of many things in my life. I have been able to change many things. I have been able to fix many things, but those abilities and gifts that I may have had to some degree are no longer working for me.
For some, dementia its a mystery. For other's it's somewhat of a hang up for them. Some seem to think were playing games with them. No, this is for real. As someone has said, "if you've seen one with dementia, you've only seen only one." That saying is worth some thought on the part of the world round about us. Once this is understood, life can be easier for all of us.
October 8, 2006
I can't I think is some of the most difficult words I have to say of occasion. Even though I can't, I can do many times. Tucked away in the word can't is can. I can either think the can't or I can tell myself that although I can't...I can make it happen.
Now there's many things that I give credit to making thing happen that can't happen. It's not just me...that I do it. Not at all. I'm so exhausted most of the time, it's not just me. It's....so many things put together, I think, that makes things happen. Now, let me be clear that not everything happens that I want to happen, when I want it to happen and to the extent I want it to happen. Not at all. But many things happen that I just don't have any reason for them happening. I've probably made no sense so far.
As I tear this apart, the Mr. Fixit in my past, the best I can...I see reasons things happen that just can't happen. That in many lives don't happen. Like my journal for instance. How many people do you know that have had dementia for about nine years, diagnosed, and probably at least two years before that and that journal? I know a few that are good friends and it's not easy, but it happens. I encourage you to check out their journals listed on My Journey site under friends sites.
There are so many reasons that make me who I am. My parents made it happen even though many others of that generation did not. Some survived barely and some did not survive the depression years. My parent's and grandparents were survivors.
My ancestors came over across the seas to a land unknown to them and made it happen. Things that couldn't be done...were done.
I've had teachers and colleges professors that instilled in me a desire to survive. I've had family and friends by words and example that have given me the same desire to survive,and continue to do so no matter how slow my steps are.
My faith in God, a personal God, drives me on, giving me strength to go a few more miles.
I have a support group that encourages me to push on. A vast network of computer friends encourage me to keep going. My caregiver and family give me the will to get up off the cough and do something.
This is why I can't, but yet I can for a few more miles. Inch by inch, it's a cinch. Please come with me on my journey.
October 10, 2006
Journaling is becoming more and more of a chore. I can understand why the majority of the older population and it seems most of us with dementia have little interest in leaning the computer.
The reasons it is becoming more difficult for me to do is that I have to remember, and the fact is that I can't remember. That's not entirely true, there are things that I remember but it comes and goes with me. One moment I remember, the next I don't. Telling me last a minute if that many times. I write things down to remember and then lost the notes the next minute. Dates are completely lost for me. My desk has several calendars and even though I might know the date for a moment, please don't expect me to remember it the next one.
Then there's repeating what I've already said, misspelled words, poor punctuation. and paragraphs. There are buttons I can push to correct many of my mistakes and boy...do I use them, but they never will correct all my mistakes. I refuse even in knowing this fact, to let it hinder me in making progress on my computer. Getting things confused, although at some moments I might just surprise you with my brilliance. Lots of laughs. Coming up with ideas and finding the time to write them down in the form of journaling. The energy it takes to for me to journal.
Now one might think with all the reminders I have, and keys on my computer to correct my mess, that I might get along pretty well. I struggle with it. If I didn't enjoy it so much and feel that I got so much out of it, I'd quit journaling in frustration, but I make myself journal for you and my many other readers and I make myself do it for me. It's great for memory and stretching my mind. I'm slowing down as you will notice if you follow my journey, but give up? Never.
Giving up is to easy for many of us to do. What's the use to keep at it? Think what would happen if I didn't keep at it, slow but sure. At one time in my life, I lived in a shell I had made for me. It had walls to protect me, I thought. I stayed safely in it for years, but robbed myself of the enjoyment of life and all that goes with it. The more I came out of that shell, inch by inch, the more I found that life was worth the living, no matter what the situation. I'll never go back into that shell. It no longer fits me very well
October 11, 2006
For the second year in a row, Sharon and I along with our daughters and some of the grandchildren were able to attend a Grand Prix Derby Race for those interested, adult males but mostly children.
This is part of the yearly events at the church my family attends. I really look forward to it. This year I have three grandchildren enter the race, Katie, age 9, her brother Darren age 12 and Shawn age 12. These are children of my two super daughter's, Lynn and Mary Ann.
First, the kids after signed up for the race spent an evening making their racing cars out of a piece of wood. They carved and colored the developing race car, making it suit their taste.
I got the biggest kick out of a child of the owner and operator of a near by funeral home. He made his racing car into a casket. Lots of laughs
Now the fathers, grandfathers and men from the church gave the kids lots of help and advice. The racing car had to be a certain race and was checked many times for any defects so that it wood operate correctly on racing morning.
The stage was set up with several racing tracks, along with the latest cameras with large screens and sound equipment. It actually looked and sounded like a race track. The kids and all attending, it seemed to me, were each full of enthusiasm. Each child did four laps and if they tied in speed with another, they had a rerace. It was not always easy for me to keep of with who was who in the starter line and who was ahead but with the help of the cameras, etc., I did the best I could. I have to admit that at times I got lost in the action, but did my best to refocus myself. My family sat together which was exciting for me. When I came time for my grandchildren to race, my grandson Nicholas and I, the Papa, made our way over to the front side and cheered our hearts out loudly for our racing family memebers.I have no doubt that they knew family were rooting for them. Lots of laughs.
I'm proud to say that my Katie came in second for design, winning a large beautiful ribbon and my Darren coming in second place in speed and went home with a trophy. Sadly to say my Shawn didn't place but he was a winner with his Papa just the same and was praised accordingly.
I can't wait for next year's race. I know it's not my race but...just the same, if my grandchildren or children are in some event or activity, I'm in it too. Lots of laughs.
October 12, 2006
My older brother Bill lives in Ohio where I grew up and enjoyed living for much of my life. Bill was diagnosed a couple years back with Lewy Body Dementia. The type of dementia I have. He's a bit older than I and the cruel disease has taken much out of him. His wife Carol provided excellent care for him until she had heart surgery. Bill had to be placed in a nursing home.
This beast called dementia runs in my family and truthfully scares me. Not so much that I and other family member have had it and have it, but that it puts those in the younger generations at risk. As a father and a grandparent I would protect my family at any cost, but here comes this destroyer that cannot be stopped, although perhaps some say, slowed down a bit, and I can't do a thing to stop it from attacking another family member. I try not to think about it much because I care way too much about my family and it would take me down if I dwelled on the what ifs. I already see the possibilities in family members and for my sake I must try to stay positive. I know from past experiences what worry, fret and being overly concerned can do to those of us with dementia. Even without this terrible monster of a disease, it can affect a healthy person. I just try not to go there with my mind, emotions and heart. I try to transfer this to other acts of love, concern and kindness for truly, I love my family.
As my brother Bill slips into that long good-bye, I ask for your prayers, thoughts and good wishes. I ask that you keep my brother and my family close to your heart. So many of you have experienced or are experiencing what I am discussing in this journal. From notes I've received I know of the many that do care about our situation and that concern is greatly..greatly appreciated.
Please put us on your prayer list, your churches prayer list etc. I believe that our loving Father answers prayer.
October 13, 2006
So many ask how I'm doing? The concern is appreciated but I never know how to answer this question. Most of those asking are genuinely concerned and really want to know but they don't want to stop, sit down beside me and listen to all my aches, pains, belly aches and boy, I seem to have many of them these days. I guess I feel one must be very careful how this question is answered. what are these friends asking and how much do they really want to know? Relatives and friends are valuable to me and Lord knows, I want to keep them. In fact, one can never have enough individuals in their lives that care and love them.
When the question comes suddenly and out of no where, it catches me off guard. O feel that I want to be honest but not boring. I want to give an answer that fits the situation but not a lengthy answer. I want to give enough information but not over do it. I know people are usually in a rush and have there own lives, even though many times the question is not just out of correct etiquette but out of honest concern.
I've tried the phrase, "better than yesterday" or "not as good as yesterday." I've even lied and said "I'm doing pretty good," or something similar. I don't lie well. I don't like to lie. Truthfulness and honesty is important to me. Short and cute answers are sometimes used like "I think I'm going to live" etc.
If I say I'm not feeling very well which usually is the truth, then it seems like I'm not giving a full answer to the question but to name the list of things that are giving me problems is just not right.
I've never really worked out what to say that will come to my mind when ask this question. Being diagnosed in 1997 and probably having had the disease at least two years before that. One might think that I've had plenty of time to come up with an answer on my health but I have not. My disease is progressive, ever changing with so many other illnesses that seem to connect with it. Lewy Body Disease seems to change by the moment, the hour, the day and the week. The question of how to answer to question regarding my health still haunts me. One might think I should have more important things to work on and that I just might have too much time on my hands. For those individuals, I have to say that this question is not always on my mind. Far from it. It's only a fleeting thought at the moment, soon to have faded away into time. I have vivid memories of standing there after asking the how are you doing question, to an individual, being totally exhausted and frustrated by the answers and the time it took for the person to finish the long long list of cause and effects of illnesses and diseases. Even though I cared enough to ask and wanted to know in a brief amount of time, it can be overwhelming for the person asking. I refuse to put another person through this ordeal of listening to me cross each t and dot each i. It's a good way to lose contact with those that care real quick.
So where's the balance in being truthful but quick and not overwhelming, boring and exhausting? Suggestions are welcome. I'm still working occasionally on this one.
October 14, 2006
Am I enjoying my journey or just enduring my journey. My journey is that every moment roller coaster I am on. I've been on it since I was conceived and will continue on my journey till my Father in Heaven calls me home.
How am I doing on my journey? Only I can answer that question. If it can't be conveyed through words, many times it can through expressions and gestures. And then there's the things not said. Something to think about. At times the things not said are just as important as the things said. Being a listener as well as talker is an important part of conversation. To hear what's being said, to hear what's not being said is so important. Others might think they know, even trying to answer for me. Now, I know that at some time on my journey, other's will be forced to answer for me, but at the moment, I like to answer for myself. If I've messed up big in some area, I can be corrected in private. I don't mind at all...in private or if it is a matter of urgency that it be in front of me, I'll do my best to grin and bare it and accept it. I'm already experiencing some of this change in my conversation.
Have you ever known someone that was constantly correcting you? Your English, your posture, your friends, your ideas and thoughts? It's like they wanted total control of me. How did you feel? As a baby we need total control for our well-being. As a toddler we need much control but as one gets older less control is desired by many. Now, I admit during those difficult teens, control to some degree is needed but when we become an adult, we've developed our personalities or likes and dislikes etc.They may change with time, but these things belong to us. How much correction do we need at that time in our lives? Rather than correction, I feel individuals need to sit down and discuss things. Open communication is very important especially with arrangements, changes, handicaps or diseases along with aging. Possible the whole way through life.
Support for me is part of communication. I need to know I'm being supported by the one I am communicating with. If that's missing, perhaps a meditator is needed.
Communication for me is so very important. There are times of the day that conversation agrees more with me than others. I have early morning fog and afternoon sundowning.Conversation for me is exchanging ideas and thoughts. It's catching up where someone else is at the moment. It's a time for sharing our feelings honestly and being open...just between us. Feelings that are just there, things that have happened, questions we may well have. My conversations can be deep or not so deep. At times I just want to hear someone's voice. It's not a time to try and force change on someone but a time when two or more can freely share their heart with one another. Sometimes serious and some times not serious. Many times a mixture. Laughter is always a good mixture. As a result more trust, love, understanding, appreciation and connection can be a part of one's relationship.
Sharon and I continually work on building our relationship. We have a good relationship but for me, relationship and continued growing relationship is based on good ole open, honest communication.
October 15, 2006
I found the nicest new clock for my bedroom recently. When it's time to wake up in the morning it sounds like a rooster crowing. The rooster is a little loud so I rush to get him turned off. Doesn't take me many cock-a-doodle-do's to make me reach out to turn the clock off but still, the memories it stirs within me are great. I do like it. I grew up mostly in the country and my Uncle Robert and Aunt Helen which lived near by, raised chickens among other animals. I remember well, feeding time in the ole chicken house which I think is long gone and the gathering of eggs. I recall the sound of the roosters crowing so proudly and I thought I should wake up to the country sound of roosters crowing. A little of it goes a long ways but it brings back pleasant memories of long ago.
It's not easy to find a clock with rooster sounds. I've been looking a long time now and while at a store recently, there is sat. When I looked at it and realized what is was, it was something I had to purchase. Something I just had to have.
Now, in the morning, I can wake up back in the country again, miles out from town in God's creation. Cock-a-doodle-do.
October 16, 2006
Michael J. Fox, one of my heroes with Parkinson's Disease, diagnosed 15 years ago as young-onset Parkinson's disease, in spite of his terrible disease, found the time to advocate on TV recently for Stem Cell Research and to support some politicians of his choice, running for office this election time.
Rush Limbaugh, not one of my favorite people had the nerve to say that Michael might be faking his symptoms or off of his medication. He offered little in the way of an apology to Michael for his unintelligent, cold. uncaring remarks. I think Rush so often fails to remember that this is America and we have rights, one of them being the right to free speech. Let's use that right while we still have it.
Limbaugh sends the message to those affected with any disease that "it's better to hide than be heard." Is there a stigma in this, a new century against those that are different? Is there a stigma alive and well in America again those with handicaps, diseases, illnesses and different opinions than ours? I'm afraid there is definitely and sad to say, much of it comes from patriotic Christian Americans.
What people don't know in America, they seem to fear. We see it in the newspaper and TV every day, it seems. Ignorance begets fear which begets acting out on the part of those who fear without cause. It's the unknown, the I've never been around them, none of my friends or perhaps family have it attitude that I'm so opposed to. Ignorance begets hate, violence, crimes and wars.
If I could speak to Michael Fox or other's around our nation and the globe that are, of their condition, speaking out loud and clear, I would congratulate him, thank him, applaud him and offer any assistance to him I could personally offer
It's time for those that are different to come out of their closets and speak their voice. We need to hear messages from all sides, not just from our do nothing leaders in Washington or those voices of division and hate. I want to hear from the minorities. I may not always agree with them but I want to be able to decide. Not my preacher, family or certainly not the party leaders from Washington, DC. I choose to follow the words of Christ in the New Testament. In many Bible's they are in red, making it easy to see what Christ really taught and said. It's time to stand up for those that have little or no voice here in our dear country while we still can.The way it looks, we might not have this right in the future. Things are changing quickly. I'm sure not everyone that reads this will agree with me, but I speak for myself. It's nice to be able to agree or disagree and still appreciate one another for the right to have a voice, a view and to be able to speak it out, or journal it for me.
God bless Michael Fox and long may his voice be heard. Rush, shame on ya.
October 17, 2006
I enjoy many types of music. During the afternoon mostly, I have a channel on TV that plays old classics, symphony, band, a mixture of music without the words that relaxes me, mellows me and brings back good memories. My daughter, Lynn, kiddingly tells me it puts her to sleep, but I've always played good music in my home, and feel the time will come when she is a bit older that she will appreciate the good music of yesteryear and today. This music never puts me to sleep.
There's another type of music I really enjoy. I was raised on it. Good old Gospel music. Ah, the memories flow, it relaxes me too, and it speaks to my spiritual side.
Bill and Gloria Gaither have been some of my favorites since I can't remember when. They are some of my favorite people who have brought Gospel music back to center stage and to the masses. The music may have changed in sound, some of the best, I might add. Sharon and I have traveled to their homecoming concerts for miles, enjoying their groups of musicians for hours at a time, hating to see the concert come to an end. I can't remember how many years we've done this but we dearly love the Gaither's and those groups that travel with them. These folks are the real thing..no pretense, no competition between groups, honesty wrapped in beautiful music.They even are down to earth and enjoy a good joke. I think there's something in all of us, when uncovered and the walls are broken down, that can relate to this bit of heaven here on earth.
We can enjoy this music from our own living rooms every Saturday evening at 7:00 PM on PAX TV.
I'd like to give you the schedule I have through December and hope that you'll join Sharon and I as we enjoy some of the best.
4 Homecoming Christmas
11 Bill Remembers Homecoming Heroes
18 Ernie Haase and Signature Sound
25 Christmas In South Africa
2 Homecoming Christmas
9 Christmas...A Time for joy
16 Give It Away
23 Christmas in South Africa
30 Best of Anthony Burger
Come join us. Get it that nice soft easy chair and be prepared for a great concert. You won't be sorry. An invitation from Chip.
October 18, 2006
Can you imagine what it's like for those of us with dementia to sit down together and relate tales of our personal journey with dementia? I can. I'm done this in our own personal, private meeting along with a leader since I first was diagnosed with dementia back in 1997. I can't wait to get there. I begin to look forward to these times together way before they are scheduled. Usually they are held two time each month. The caregivers are invited to but they have their own private meeting, separate from those of us that are affected.
We began attending these support gouts back in Akron and Canton, Ohio and now, having moved to Florida, we have again discovered and attend a similar group at Daytona Beach. These times have met so much to us and without them, I know I would not do near as well as I do.
In the good ole days, families would hide individuals like us. They'd keep those that had illnesses like ours, probably the same as ours, in the home, in a bedroom, or worse yet, send us off to a mental institution or home for the aged that at times would accept those that were "different." How sad. How very sad. The individual lost so much and so did the families and others. There was a stigma attached to such a disease along with misunderstanding.
Thank Heavens, today, the Alzheimer's Association in many areas of our country have realized the need for not only a caregiver support group but also a joint group consisting of both the affected and the caregiver. It''s been long over due and has not happened easily. Old habits and ideas are hard to die. It has taken much pressure and support from concerned families to make this happen. Still, I understand that across America, many local Alzheimer's Associations still prefer and continue to deal with and serve only the caregiver. What a loss for all of us. If those that operate the national association would only come to one of our support groups and sit in, they would see the benefit of joint meetings across our land and so many Alzheimer's families that now don't have a support group would soon have one to attend but demand of the national association. To leave this decision up to a local Alzheimer's Association office will usually not work. This has been proven by the few that sponsor a joint support group. Once they hear our conversations, see how we connect with one another, hear the issues that we deal with daily, see our great leadership and hear our laughter, I don't see how the needed, desperate change wouldn't quickly come. My dream, hope and prayer is that every local Alzheimer's Association across America would make the choice not only to serve the caregiver, who certainly needs support, but also the affected individual who creates the need for the very existence of the Alzheimer's Association. The local groups should not have the choice. I'm sure many are overwhelmed, understaffed and underpaid, however, it is my experience for the affected and caregiver to have the tools to continue on the long good-bye, a joint support meeting is necessary.
I encourage those of you already involved to voice and show your appreciation for your joint support groups and for the American masses who have no such group, I urge you to call and write the national Alzheimer's Association demanding that join services for both affected and caregiver be started in your area. It's not just a good idea or thought for some where in the future. It's a right we have in the here and now. Be an advocate. Maybe for your very first time. Let your voice be heard loud and clear and don't give up until the each county and large city in the United States has support groups that serve both affected and caregiver's. Please, and thank you on the behalf of those of us who have little or no voice in the matter. Your voice and insistence is needed to make this happen. Help make my dream come true. Keep those notes, letter, calls, emails and fax's going till we see results across America. Thank you for your concern and kindness. Let's all be advocates for those we love and who need us. It takes so little energy and time but can make such a big difference in the life of those affected by dementia. If I'm on a band wagon, it's out of necessity and deep concern.
Please Contact: Alzheimer's Association National Office
225 N. Michigan Ave Fl. 17
Chicago, IL 6060l
October 19, 2006
The national Alzheimer's Association has an interesting computer site that is well worth our attention and time. The Alzheimer's Association Home is at: http://ww.alz.org/
On occasion, I like to browse the site, finding it useful, interesting and supportive of our special needs.
For questions, advice and support they have a 24 hour Helpline. It is: 1.800.272-3900
I hear many complain that they have no support, no one to talk to about issues ... Well, It's time we might want to consider using what's been made available to us. I'm journaling to me as well as others here. I don't always use what's been made available to me and I don't really have a good reason for not doing so. I admit at times....at times I do enjoy complaining but it's not an easy thing to control. It's so easy for me to sit there in and have my own pity party without being active and doing what I need to do to change my situation to some degree. I know that few of us do this.
I don't want sympathy...I want support. I don't want to make other's feel bad about my disease but I do ask that they walk with me through this long good-bye. I'd do the same for them in a minute. I try to never ask someone to do something that I would not do myself. We need each other.
October 20, 2006
Halloween was a fun time for both Sharon and me. Didn't get it much thought till toward evening time. Fortunately Sharon had planned ahead of time for the event and had candy available to the children who came by. I love to watch them, even though here in the country where we live, we have few visitors. I enjoy looking at their costumes and hearing what they have to say.
Last night, we had all the way to six stop by our home. We were excited. We had left our outdoor porch light on to invite them to our house.
After the kids were gone, Sharon and I slipped our funny mask on and went across the street to Jean and Janet's house to surprise them. They are neighbors and good friends of ours. We sat on their porch together for some time visiting and enjoying each other's company.
Some seem to feel Halloween should be done away with. Some because of "the bother," some because of fear and some because of misguided religious conviction. Hey, I went trick or treating as a kid and enjoyed it, looking forward to the event until I got to old and was no longer child. When we outgrow the fun and enthusiasm for fun events such as this for our kids and we older kids like me...lots of laughs. Maybe we should consider looking back to the fun days of yore when we were children and enjoyed the event so much.
Just some thoughts.
October 21, 2006
At the very end of our my daily journal is a statement within a square that says Top Alzheimer's Caregiving Sites. On that square is also a large heart with a rose. It then says that if you feel my site deserves it, you may vote for me daily by clicking on the button (the heart). After that you are taken to a page immediately stating Topsites Gateway Page. You then push a button, enter and vote. It sounds difficult and time consuming but it's not. Please give it a try. We don't ask for much and personally, it makes me feel very loved. After once, it's easy. It's not at all that I feel my site is the best site on the list of 126 sites. These are some great sites well worth the read. Within them you will find a wealth of knowledge on dementia sites there and lots of support. There are also those sites there of individuals affected by dementia that journal and need your support.
Here are some of the sites I try to vote for daily:
3-Simple Pleasures by Peter Smith
4-DASNI Dementia Advocacy and Support
49-Jeanne from Hawaii
87-The Ribbon Online
Alice and Morris, two dementia friends are also on this website but do not have voting spots.
Some of the sites I personally miss are Diana's,Jan/Mina's,Joe's,Laura's,Tim Brennemen's and Tracy's. There sites were enjoyed by me.
Come read, enjoy and don't forget to vote for us. We need you. Please and thank you.
October 22, 2006
The month has quickly gone by and I haven't been able to keep up with it. This is not usual for me but a norm.That's all folks, for this month.
I'm tired of journaling for the month but will pick up next month in November. Sometime during the month, Ms Tay, my more than generous webmaster, will collect my journals form October and post them. Since she does have a life of her own and a very busy one, the journals are posted when they get posted. I appreciate the free work she does to make my journals possible. Please don't give up on me and keep checking through the month for them.
That's all folks for this month. It's been a pleasure journaling for you and for me. Thanks for sticking with me and reading my comments and for voting. God bless ya. It's nice to have friends.
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