August 1, 2006
My grandson Shawn, who is almost 12 years old, rode his bike over from his home to ours to spend some time with us. Shawn lives about a fourth mile from us. We spent some time talking, catching up on his life, and eating supper together. Nana made a cheesy tuna noodle casserole with a side of apple sauce which we both enjoyed. After a bit of evening news, I challenged Shawn to a game that he would like to play with me. He chose a game called Racko. It's a card game where you rack of cards from the lowest number you get to the highest in numerical order.The fisrst one who get's all their cards in order wins the game. Shawn won two games. I won one. Shawn was the champ.
I enjoy challenging my grandchildren to a game many times when they come to visit.Of course we usually end up playing atleast three games, it seems.By that time I am worn out. We have a closet shelve where we keep games we can play. My problem is that the games in the closet that I can still play with the children are becoming less and less.
Because of my poor memory, the game must be simple and short, due to my short attention span. In spite of my dementia, we still have quite a few games to pick from.
It's fun to play games with my grandchildren. As well as playing a game, I hope I am building up good memories with them of happy times with their Papa.
I enjoy playing games with my grandchildren when they come to my house, even though I get beat more than I win. Lots of laughs
August 2nd 2006
I was chatting with a friend named Steve on the computer today. I ask him to give me time to try and understand what he had just told me. Steve told me to take my time.
That remark got me thinking about setting my own relaxed pace. At one time I was in a hurry. A hurry to grow up, to go to college, to get a job, to keep a job, to get through college, and after marriage, to maintain a busy life style. I seemed to be on an adrenaline rush. A merry go round that went faster and faster with no stopping place in site. Oh there was the weekends, the holidays and the vacation that I loved. Retirement was not even considered.
The age in which we live is an age in a hurry. Rush here, go there. It goes at a hectic pace. Many couples have two jobs, one for him and one for her. Many times there's over time or take homework. Some men work two jobs to make ends meet. They both maintain personal friendships and joint friendships. At times both take classes of some sort. Then the baby comes and at times the second and wow, the rush is on. As the child grows the activities take on a new rush. There's church, clubs, social activities, family activities, sports, hobbies and an occasional weekend get away to make it. Then there's volunteering. and on the list goes. Oh my...
My hectic life was cut short when I became ill. It began to slow down as I struggled with the troubled waters of what was to be my new life. A disease that would turn my life upside down. Not only my world but that of my wife.
Out of necessity I suddenly was thrown into a new life. I was diagnosed with dementia. Exhaustion is one of the things that seem to come with the disease. Along with exhaustion, a new pace is forced upon us in order to keep going. Many times that pace is adjusted as the stages of dementia increase. Keeping any type of resemblance to the old pace become impossible.
I went suddenly, it seemed from a fast paced life to a slow paced life with little preparation. It was almost a shock to my system and is still difficult for me to accept.
Over the years, I have had more time to adjust to my slow pace and have tried to make the slow pace a relaxed pace. I had worked hard and long on accepting that this was the way the rest of my life would be, trying to understand my disease without thinking much about future developments of the disease. Acceptance is not always so easy for me. As my stages slowly worsen for me, acceptance becomes more and more difficult for me. I'm glad that this process initially began in 1997 when I was first diagnosed. Change is difficult at any age for many of us and as we add the dimension of age to it, it can become a real difficulty for us.
I'm now living out my life taking my time. It's not what I had planned or wanted but it can be done. I'm living moment by moment, day by day the long good-bye. The way is filled with many difficult moments but...life goes on.
August 3rd 2006
In this life what is emphasized, it seems to me is largeness-bigness. The larger or bigger, the better. Being never or seldom satisfied, were pushed to get bigger and better. If it's big already, make it bigger yet.
I was thinking is bigger always the best.
I married a little lady. Couldn't help myself. See, I feel in love with her. Although she is small in size, she is just what I needed. Just right for me and I wouldn't trade her for the world.
I was thinking about the little things in life. Do they count? I think they do.
The other day there was a birthday party at our house. It was for me. Yep, another one slipped by me. My daughter's and grandchildren were present with me for a time. Somehow we were talking and I told one of my daughter's Mary Ann that the best part of the party was having them there with me. There presence was the best present money could buy.
Got me thinking about the little things in life that matter. For me it's the times my wife just comes in to sit with me...for no certain reason. Just to be with me.
Some times it's just the smile, the hello or the pat on the back. At times it's just the hand extended to me that's just the right thing. A little thing, yes, but the best thing for that moment that could be done for me.
Little things, a kiss, a hug, a phone call, a note, a letter, an email, a visit, a kind gesture or word. These or the little things that count in my life. You...your time. Your soft voice. Little things are great when love is in it.
I wanted to close with something called Little Things in Life by Dave Griffith.
Too often we don't realize what we have until it is gone:
Too often we wait too late to say I'm sorry- I was wrong.
Sometimes it seems we hurt the ones we hold dearest to our hearts;
And we allow foolish things to tear our lives apart. Far too many times we let unimportant things into our minds;
And then it's usually too late to see what made us blind.
So be sure that you let people know how much they mean to you;
Take that time to say the words before your time is through.
Be sure that you appreciate everything you've got'
And be thankful for the little things in life that mean a lot...
August 4th 2006
Today was the day for my friend Tommy and I to volunteer at the city Bread of Life soup kitchen. If you've never volunteered at a soup kitchen before your missing a special experience that lingers in one's mind and heart.
Of course there's some work involved. After arriving at the kitchen, before those planning on eating lunch arrive, set up is necessary. For me, there's disinfecting and cleaning the tables in the dinning room. At times making sure chairs or in order and then retuning to the kitchen area where the cook, Johnny along with Tommy has begun to set up the prepared food for distribution as those coming through the line eagerly await. I pitch in and assist what is already in process.
My duty normally is to set up the drinks making sure I have plenty of cool aid or juice, water and milk ready in containers for serving our friends quickly along with cups, a paper towel in case it's needed and a plastic glove so that should I be needed to serve food briefly during the serving time, I would be able to do so.
Usually I also unlock the doors at a certain time. Many times some are waiting to come inside and form a line to get their dinner. The kitchen is open for an hour and a half each day. I really enjoy serving these special people. Just to look into their eyes and faces, smile and occasionally say a word of cheer makes my entire time at the kitchen worth while. Some of the positive comments made by some of those passing through line or before they leave are enough to keep one coming back to serve at the next assigned time.
Johnny, the cook is very good at what she does, usually with a large fresh pot of tasty soup. I've sampled it...and know it's always fresh and tasty...lots of laughs. Then there is pizza donated by a local pizza company, at times bread or rolls of some type and always desert along with donuts, donated by a local donut shop. I'm permitted to sample when I'm not busy and sample I do, on occasion.
Our friends don't go away hungry. They can return for seconds again and again until they are full. Many compliment the cook or thank those of us working at that time. Once a month serving these that need a good meal is not too much for me to do. In fact, it's the least I can do. I sort of wish I had more days that I could volunteer at the local soup kitchen.
Before one leaves for the day, doors must be locked, food and drinks must be put away, pots and pans, etc., must be washed and stored and the tables again. To end it garbage duty is part of the process. Oh, what a time I have. It takes a lot of my energy but is well worth my effort.
August 5th 2006
On occasion when I am setting up my journal entry, I forget to put the date on the entry. This can be a problem for my webmaster Tay who does a great job of working with my difficulties. I think I put the date on my journal no, I didn't.
Perhaps it's because dates are almost meaningless to me. I never know from moment, day to day, what time it is, what day or what date it is, let alone the year. There are many calendars in the house, one even on my computer desk right beside me. There are many clocks in our home and the year is posted clearly on the top of my personal bulletin board which is next to my computer where I seem to spend time each day. How much easier could it be to keep track of time? I can be told this information and a moment later, it's gone. I've forgotten.
In my past dates were of ut most importance to me. As a professional, I had to know times and dates. They were essential in my life as well as my personal life. I don't recall when time began to disappear for me, but somewhere along the journey, this change took place. It's strange for me to be timeless. It's sort of like floating through life from moment to moment and day to day. It even comes down to year after year.
It creates some problems for me, but fortunately, I still make attempts at being independent in these areas although it makes for much uncertainty. My attempts usually don't work long for me, if at all. Thank God for a a good, caring caregiver, my Sharon that does her best to keep me on time.
August 6th 2006
It occurred this morning. I was in the kitchen making my breakfast. Sharon was sitting near by setting up our medication for the week. We work together, doing what we are able to do, to get needed things done.
I asked her what time it was. It was still morning hours, but in the back of my mind somewhere was the fact that we had been invited and would be attending the anniversary party for some friends later in the day. I know it takes us both time to get ready for events such as this. The question crossed my mind momentarily, causing the question...."what time is it?" to suddenly come out of my mouth.
Now our kitchen is small. In the kitchen is three clocks of different sizes, although not all on my eye level. If I'd been thinking I would have been able to check the time for myself but I wasn't thinking..or not thinking well. My mind's not gone, but my thinking is slow, one might say sluggish.
Although I can be surrounded with cues, things that would tell me what's going on, they aren't always the answer for me. There are so many times when something flashes across my mind and is quickly gone. I try my best to grab that passing thought and act on it, write it down or ask it. Connecting a clock together with time is not always what I'm able to do at the fleeting moment. "Sometimes I stop to think and forget to start again."
August 7th 2006
Have you ever had someone creep up behind you and scare you? I have. I need to know who is behind me. Being a bit anxious, nervous and slightly paranoid at times, I can over react easily. A scare is not the way to get on my good side. It can agitate me and make my situation worse than it has to be.
I've had to tell children, although I know it's fun for them and a game, it's not good for me to be scared suddenly. It seems they understand and are no longer playing the game. I like to play games with children, especially my grandchildren, but this is one of them that I can't play.
Even when this game is not being played, because of my disease, it is best to approach me slowly with speaking so that I know your there. This also gives me time to try to tune into what is being said. I might miss the first few words of the conversation and need it repeated or said in a different way for me to understand. Then there are times some of us with dementia are just not going to understand but personally, I try hard to understand. I want to be included and many times, I will be able to participate to some level in the conversation.
I need to be approached slow and easy like. I appreciate it when one speaks directly to me...not at me. If I am aware your speaking to me, I will observe you and do my best to pay attention and make sense out of what your saying. If I seem to not understand, please don't take it personally and give it another try. In this manner, many times I can enjoy a conversation. I also need to hear the ending of the comments. Other wise I question what has been said, and at times will not ask one to repeat themselves. By giving me a complete but concise comment, I have a much better chance of understanding or getting the jest of what is being said.
Please remember the tone of voice. I can pick up on agitation and one being in a hurry quickly and at times will become agitated by it. Patience and practice can make my life so much better for me and much easier on you.
August 8th 2006
Yesterday was my wife and caregiver, Sharon's birthday. Although we can no longer celebrate these special events that come along in the year as we once did, we still celebrate but in a much more subdued manner.
Birthdays are special events or can be. These are special times to stop and count the candles. Lots of laughs. In case Sharon needs help in blowing them all out, I'm there for her, right beside her all the way, to assist her with the tradition. I'm so glad Sharon was born. Only one year after I was born. In my life, my God had prepared just the right one for me and my life. What a blessing she has been to me and I wouldn't change her for anyone or all the tea in China. She's of great value to me and is my life partner as we travel this journey together, side by side.
Happy Birthday, Honey and many more..
August 9th 2006
As many of you know, we live in sunny Florida. This time of the year are the dog days. They are extremely hot and humid. I don't do hot and humid very well. We've been here now for over four years, I'm told, and I don't know that I will ever get use to this type of weather. I sort of hole up in my home...me, my wife, cat, air conditioner and ceiling fans.
Living in Ohio most of my life, I seemed to be able to handle the hot weather better. I've been told that this northern boy...that's me, lots of laughs, just needs to be here in Florida for a few more years and the extreme late spring and summer will get more tolerable for me. I sort of have my doubts if that will ever happen to me. I can only wish.
During this weather, I just stay inside of our home most of the time with a few quick times outside when I need to do something. During these times, I quickly slip from our home to the car that is air conditioned just like our home. The problem is that we have many nights that do not cool down and the car is hot when I get into it. Even with air conditioning, it takes some time before the car cools off to a comfortable temperature.
My temperature gauge seems to be broke. I don't completely understand why, but it seems it can't be fixed. I can go from hot to cold to hot in a matter of minutes and I'm not going through menopause. I seem to be adjusting the thermostat much more than Sharon who is usually hot. Her thermostat is broke also and can't be fixed, it seems.
This creates an additional problem for us. One turns the thermostat up, the other soon turning it down. Were not playing games with each other. Were just doing our best to survive. I can't usually remember when I've turned it up or down.
And then the ceiling fans. We had several installed in our home. When I'm sitting a distance from one and the air is set to aim at the ceiling, I'm usually...I say usually all right but I can't stand it directly on me or over me.
The air conditioner and the air fans work fine. It's just the two of us that aren't working as well. Any suggestions would be welcome.
August 10th 2006
In the background music is playing as I do my journaling. It's easy listening that is featured every day, all day long on one of our TV stations that we have. I keep the volume down so that's it's background music for me. It's a mixture of orgestra, instrumental, light jazz etc. I really enjoy it but many times I don't seem to know it's on, but I am receiving benefits from it. When I think of the music and focus a bit on it, I can appreciate it more. The music tends to relax me.
My eldest daughter, Lynn says that my music puts her to sleep. Not me. I love good music with strings, brass or piano. Just the music without voices included. Many times the music brings up old memories or is familiar. Many times it's hits from down through the years that are put to music.
I have found that I also enjoy a tape of music on as I go to bed at night. At times the music is mixed with sounds of birds, the ocean or the wind blowing. This is an added dimension to the music that I enjoy. Many say music is good for us even as we sleep, but I have not tried that yet. I do go to sleep with a music tape on but the tape stops when music on it ends and the recorder shuts itself off automatically.
Music is very important to me as it has been since I was quite young. It calms and soothes me, quiets me down, relaxes me and at times inspires me. It's comforting as a background. I do have certain hours normally set for music. I don't want it on nonstop, all day or every minute. Morning hours or normally not the time I want music. Music is something that all can enjoy. It seems most of us have our favorite musicians or types of music that we prefer. We might have favorite music instruments we enjoy more than others. My favorites are piano and brass. Light guitar is also enjoyable as well as harp. Music to me is a gift that keeps on giving.
August 11th 2006
I saw a penny on a carpet in our home yesterday. When I looked again, it was gone. I searched the carpet by eye and could not relocate it. I didn't say anything to Sharon and forgot about it for some time. Then, I crossed the same carpet later in the day. Looking down, not really looking for anything in particular, there it was. The penny was in my focus and I was able to reach down and pick it up. The penny had blended in with it's surroundings on that carpet but was still there. I just could not see it Now, I'm color blind and that didn't help me out in this situation.
Many times when I think to hard about something I want to recall, it won't come. There are many times that the information is no longer available to me. It's gone who knows where but it's gone. Then there are moments when I quit trying so hard to concentrate on something I had wanted to know and all of a sudden, there it is. I remember for the moment what I thought had been lost. It reappeared into my thought pattern. I just never know where I might be on the memory map from one moment to the next. At times it seems that my memories blend in with their surroundings and just like someone that is color blind, it's next to impossible for me to pick them out.
Thoughts seem to play games in my head. There there, there not there, a few reappear when there good and ready. Some thoughts never to return. Oh well..One thing I can say is that my day is full of challenges. A good attitude can really help me get through the day.
August 12th 2006
With my fading and ever changing computer skills, it's a wonder that anyone ever receives what I intend for them to receive on the computer.
There are times I send something interesting to friends. I try not to be an annoyance, but I do enjoy sending jokes, inspirational thoughts or just something that I find interesting to friends on occasion.
First, many times I put in the wrong email address and it returns. Other times my friends have moved or changed email address and forgot to give it to me. At other times I discover that there box is full and I should try again. I love it when I send a card or an item using my address book. Many times I can put in about eight email addresses at one time. Then I hit the send button only to be told that one of the eight email addresses is wrong or has been changed and it's up to me to figure out which one it is. Oh, that one is really a stressor for me. Today I found that a relative had decided to sign up for a program that only allows certain individuals to send emails to them. I was not one of them. Fortunately the company involved had an attached note I could sign and ask my friend if I could get on his new email friend list. Now, I'm waiting for his responce.I hope I see it when it comes in my got email box.
There are times that I send an email that I received that I like to my friends. They receive the email I sent but there is no wording or pictures accompnig the email I sent. I'm ask to try it again like that's going to happen. The request is usually lost in the many emails I receive in one day, mostly which is unrequested junk to delete. If I'd take care of my daily emails with replying to them and or deleting others, I could keep more order to my emails, but that seldom happens and many times I get way...way behind in this area. Then there are times that the email seems to disappear or at least I am unable to locate it or I discover it weeks later than received
At times I think I sent someone an email and I didn't. At times I don't think I sent someone an email and they get two. Then I must remember who can only receive letters but no attachments.
Of course there's all those buttons, many of unknown value to me, that I keep hitting and missing along with the correct keyboard keys. If it wasn't for spell check, my message would be unimaginable. Even with spell check, I can leave out words, give a word that has several meanings, or several spellings, reverse words and so many other things that are just plain errors on my part.
Some individuals get two or more copies of items and some get none. I thought they did but ...no, they didn't.
Aren't computers wonderful? Although they are not all what they are advertised to be, a computer helps me keep contact with many family and friends across the nation. I just hope everyone understands when I mess up.
August 13th 2006
On this date, Sharon and I celebrated our 40 th. wedding anniversary.
I'm trying to think back all those years ago when we were married. We were both so young. I was 21 and Sharon had just turned 20. I was only in the second year of college and working full time. Sharon lived in a small town some miles from us and much of our relationship before marriage had been carried on by letters. Of course we had a few dates also.
I just felt for certain that this special beautiful and talented lady was the one God had just for me and so I popped the question, along with an engagement ring quickly put on her finger.
When I gave Sharon her first kiss, it felt so right.
Many years after, I'm thankful for the decision we made. There's been many miles and many ups and downs since, but it's been well worth the effort made. Through it all, God has been with us, leading us, helping us, teaching us, helping us to mature and I'm looking forward to many more years...together.
August 14th 2006
We didn't really get to celebrate our wedding anniversary this year. It was a busy weekend and that Sunday afternoon, I went off to the Mayo Clinic in Jacksonville for a sleep apnea test arranged for by a Mayo Doctor. He had noticed during an office visit that I appeared to be having difficulty with my breathing. I hadn't mentioned this problem I've been having for some time.
The first test given was an overnight home test called a Pulmonary Med Oximetry Overnight. I'm told that this test resulted in hundreds of times when I had stopped breathing during sleeping. The doctor was concerned, feeling I might have severe sleeping apnea.
During the test at Mayo Clinic, I found it difficult to sleep but it was found that I had stopped sleeping three times during the night. A sleeping mask was used for part of the night.
The results of all testing indicate sleeping apnea and I will soon have a c- dat, which is the name of an oxygen face mask I am to wear when sleeping. I remember the first night during my test at Mayo that I put it on my face, it felt so good. For the first time in a long time, I felt that I could breath finally. Although I have breathing difficulty during the day also, this oxygen mask is only for night time. I feel that I need some oxygen during the day as well on occasion and might have to pursue this with my doctor in the near future.
Step by step. First I'll wait and see how the oxygen mask for night sleeping affects me.
August 15th 2006
Some time back I purchased a pair of suspenders from the store and brought them home. I waited for Sunday morning, and put them on instead of a belt that I usually wore. I had my wife, Sharon color coordinate them with my clothes and off I went.
This was sort of an experiment and I liked it. I found the suspenders held my pants up nicely around my waist and was much better than any of my belts for support. I now wear my suspenders most days.
I later went back to the store and purchased several pairs of suspenders so that I would have matching colors for different clothes that I wear. Being color blind, I usually ask Sharon to lay out my clothes for me, at least for special meetings. I remember years ago before we agreed to this arrangement, the girls at the office where I worked had a good time with some of the color combinations I chose to wear. The ladies seemed to be more clothes conscious than I was and would comment on occasion about my color arrangement.
Sharon, bless her heart, has taken this assignment on without very few complaints. I have to say when you get me in my suspenders and color coordinated, I look pretty darn good.
August 16th 2006
I just received a note from my friend, Steve. He was worried about me. Steve is one of my friend's that I am connected with online so that when he and I want to chat online, we can. Steve can see when I am online and I can see when he is online.
This morning about eleven o'clock or so, I turned my computer on for the first time today. I immediately noticed a letter from Steve asking if I was OK or not? It seemed I had gone off line last night, leaving the computer on. It was actually on something that I had been looking at while surfing the net.
I immediately sent back on chat and on email that I was OK and had accidentally left the computer online on all night. I don't recall ever having done that before, but with my memory, I can't be sure.
It's nice to have some close friends that look out after you. Friends...how blessed we are to have them. Thanks Steve for caring.
August 17th 2006
A good friend just died. He had such a struggle the last year or so with bad health. Mr. Ed, as I affectionately called him, really tried with everything he had within him to make it to church, which he dearly loved, and pushed himself right up till he was called home. His caregiver wife, Joyce was always close by his side and cared for him lovingly.
Ed was an important part of our church since we moved here to Florida from Ohio, and began attending. He was part of everything it seemed. He sang with the worship team, sang in the next service with the choir, was active on boards and with the men's group that I am a member of.Mr Ed could always be counted on.
It was his smile, good nature and loving friendly words that I will always remember about Mr. Ed. He would light up the entire room with his warmth and laughter.
Many times I recall greeting Mr. Ed with "it's good to see you, Mr. Ed." In return he's so often say, "Chip, it was good for you to be seen of me." What a great sense of humor this friend had. I always looked forward to being with him in worship and other activities. On one occasion, he was walking back front assisting with worship when I, sitting on the side of the roll, pointed at him with a smile. Mr. Ed in turn told me he was keeping an eye on me. I think Mr. Ed kept his eye on each one of us.
In our service there are to many individuals to talk to them all, before they rush home our out to lunch from a morning service but I made it my business to always find Mr. Ed and joke with him. What a man. What a role model for me. What an example of the joy of life. He will be sadly missed by many of us, but we know one thing for sure, that he's in Heaven, enjoying all it's beauty, while he brings laughter and warmth to all those his life touches
Mr. Ed and his wife Joyce just celebrated their 50th wedding anniversary with friends and family. Although he has been gravely ill, somehow I just knew he'd make it to this important mile stone in his life. You know what. He did. And what a celebration it was.
Thanks Mr. Ed for sharing your life with us. You have made a big, positive difference in our lives. See you in the not to distant future. I hope our mansions are close to each other.
August 18th 2006
I'm here at home alone. My Sharon is away at a ladies party with my eldest granddaughter, Ashely.Sharon's home more than not. She really prefers home but on occasion, she gets away with family, friends or by herself. Many times her get aways or for errands but I like it when it's just for her.
I don't mind being at home a while by myself. There's a large note on the floor near me telling me where Sharon is and I know I can reach her by cell phone if needed. Both daughters and their children live near by and can be reached by pressing one key on the phone. Sharon has the phone set up nicely for me. I know how to call out in emergencies and can contact family or friends by the touch of a button. I also have a neighbor whose also a friend that is almost always home and eager to help in any way she can. How better could it be? Sharon needs time just for herself. She doesn't have an easy life with chronic pain and then me. I'm a plateful by myself.
I'm glad when she finds opportunities to do her thing, in her way, when she wants to. I wish she'd do it more often. Just get away from it all... While away, our house cat Noel and I miss her and many times listen for the car to come in our drive. We both find things to do but it's special having Sharon at home with us. Noel can hear Sharon returning home better than I can and unless she's in a deep cat dream or sleep, she comes racing to the front door, waiting impatiently for her mama to come inside our house.
Isn't love grand?
August 19th 2006
How difficult is it to say, I love you? For some, it's seems pretty difficult. Like the husband who told his wife, I said I love you once and if it changes, I'll let you know.
Humans, being very human, like to hear the words, I love you. I Not only like it, enjoy it but I need to hear those words. They can be said out loud, softly in my ear or in writing. I'll take all three ways. I know actions speak louder than words, it's said. I see the actions but I still long to hear that I love you. Once is not enough for me. I need it said orally and in everyway one can possible say I love you often. The words never get meaningless. They are full of meaning for me. I also like to say them. Not just mere meaningless, thoughtless words, but words full of meaning.
Love makes the world go around, it's been said. Love also brings with it contentment and good feelings. Words can hurt, destroy, bring healing, knowledge and comfort. I love you is so easy to say. Once we've said it, it gives us a goal to live up to. Saying and doing in this area can go hand and hand. One is not adequate without the other. I guess I'm a romantic type of guy. Always have been....always will be one. I can't help myself and wouldn't change it for anything. I'm not ashamed. It's who I am by choice. I don't just want to hear the words, I love you, but I want to say it. I want to do it, I want to act it out in giving of myself. Love for me is something you convey by words and deeds. Don't wait till to late to convey this message loud and clear to all those dear to you. There have been many with regrets to live with after a love one has gone on to their Heavenly home. Love and deeds can cut though many weaknesses and failures in our lives. You should have known I love you just doesn't do it in my book.
August 20th 2006
Life is a mixture of joy and sadness, of wins and losses, of successes and failures. I've never heard of anyone's life that was different from that. That's how my life has been and continues to be. History tells me that I am not alone. The newspapers and TV news tells me I am not alone. Within I know, I am not alone. It's our reactions that make all the difference.
With all of these ups and downs on our journey, how do we handle life? I've handled life this far in many different ways as I have seen other's handle there lives. Were all so different even though we might think were alike.
There's been many times when I was living on a high. A high produced not by substances foreign to my body, but from highs that just came with life. Things that we might not think of often. For me breathing is a high. Being alive and having adequate substance to exist on. Loved ones and friends, they are a high. My God is a high. But then many times without warning the lows come. The disappointments with life and others. At times disappointment with myself. The losses that seem to come along. The sad times, the sick times. Some sickness comes and goes, but then there is the sickness or disease that remains.
There's times I react with faith, trust, confidence that all will be well, then there's the times I react with rejection, withdrawal, isolation and depression. I'm just a man. And as someone said lately," I have feelings too." We all do. We each react differently to different joys and losses. Different stresses.
It wasn't long ago, I reacted with depression. I'm prone to depression with dementia but I can't always blame my dementia. Some times I have to be honest and say that I allowed it to overcome me and get me down. Some times I wallow in it. Then there's times that I work on it with everything I've got and with the help of the good Love above and my family and friends, I climb out of it to face another day..another battle.
Many times with one hit or loss, I can survive, but when I keep on getting hit, knocked around, and the rain just keeps coming, it's then that character counts and trust counts.Perserverence comes to mind. It's then that we can allow ourselves to be surrounded with God's love and the love of others. It's then that we make the choice to reach out for help or to pull ourselves inward and think that we can handle anything that comes our way all by ourselves. I can't do it by myself but it's taken me a long time to get there, but there have many times in my life that I acted like I could. I put on that false face, acting with pride. Hiding my true self and feelings from those that cared about me.
The older I get and the more experiences I have. The more my stages of dementia increase, I acknowledge that I can't do it all, be it all, stay on top of it all...all by myself and I need other's. I need those that will help me carry my heavy load. I'm still learning this valuable lesson, stumbling as I go on. Some never learn.. Will I be one of them or will I be one that reaches out, and gains the strength I need to survive?
August 21st 2006
I was talking to a friend today on the phone who has Bipolar Disease and MS. If one disease wasn't bad enough...she has two terrible, complicated diseases.
When one looks at their lot in life, they don't have to look very far to see other's just like themselves that are suffering. There are those that suffer far more than I have suffered.
Anyway...we were talking about some of the things we both do to make life better for ourselves and our diseases. Some things we've found to be helpful and some ...not so helpful. Some were no help at all. Some cost lots of money, some were covered by insurance, some were given to us by others and some are still setting on the shelf, unused or used only one or twice. There's so many reasons for this. We forget about it, don't like the way we feel on it, don't like the way it taste, think it's a miracle cure and are disappointed when we find that it's not and we also tend to remember that medication takes some time to get into our systems and work for us. On and on the list goes. We just give up.
I've thought about what I do for myself and have come with the conclusion that nothing in itself is the answer for me. There is no cure for what I have. No one thing that I can take and be well. Whatever I do for myself is worth my effort to try them and give them some time. Together, the advice, the support, the prayers, the faith, the medication and treatment, the x-rays and tests all together are a help in the right direction.
First I must admit to myself that presently there is no cure and secondly that I will do everything within my power in addition to accepting all the outside support I receive, to make my life better by working with what's available, what works for others and things that I learn about along my journeyfrom others. I must quit that "poor me " thing." Putting all these things and more together,....I'll make it a lot more miles on my journey and my life will be less stressful.
August 22nd 2006
The great comedian, Rodney Dangerfield said, "I get no respect." Could it be said that many of those with dementia get no respect, little respect or perhaps the respect as the roller coaster of emotions we live on allows us to give? Do we give and pick who we give respect to? Do we hold grudges and resentments?
I was thinking about the area of respect. The dictionary says respect is having deferential regard for; esteem. To treat in accordacne with consideration or importantance, paying attention to; heed, also to be concerned with.
From little up I was taught to respect others, neighbors, elders, church family, and my family. Some time in my spurts of growth, I began to understand some of what respect was about. I called my parents by the title of Dad and Mom. I called my Aunts and Uncles and Grandmother not by their first names only, but by attaching their title to their first or last name. We respected the rights of family, neighbors and strangers. We respected the elderly and sick. As I got older, I learned to respect those that were different from who I was. Different colors, ethnic origins, conditions of life, religions, life styles and views of life. Even different politics. I also learned self respect.
Now that I am getting older myself and have a life controlling progressive disease, I appreciate the fact that many treat me with respect. These individuals weren't raised in a barn. They were raised in homes that taught respect and dignity. They probably received respect themselves.
Respect, dignity, honor. For me they all run together. When it's missing, an important element of goodness is missing. It's not that I feel I deserve these things. At times it just comes down to good etiquette, manners,How one was raised and education. I do have to say that I feel much better when respect is used with me. I also feel that other's deserve respect. As we are sensitive to the needs of those around us with dementia, we can act or react with many emotions. Hostility, anger, feelings of being superior, of being better or knowing more, of being taken advantage of, of being trapped or robbed of what we deserved. Even though our actions might not give away whats inside of us, many times our speech will. It's difficult to hide our speech from dementia individuals. Many notice the slightest increase in volumn or change in voice tone.I know I do. Many us of are pretty sensative to emotions and feelings and can read between the lines.This can encourage us to act out in a negative way. We might be wrong, but why should we even be forced to go there. Treat us in the same way you would want treated and realtionships can be oh so much better. Life memories can be made for those involved.Those of us with dementia might forget what happened on some occasions.We may forget exatly what is was but know something negative took place.We are living moment by moment, not quite sure of what tomorrow holds or how much longer we will be here. Those moments can be so much more meaninful for all concerned when wrapped with repect and dignity.
After were gone, family and friends will remember Actions and lack of actions will be remembered. then it's too late to correct or fix or ask for forgiveness. It's to late to say I love you.Knowing we treated someone well can be a big part of how one grieves and how one heals from the absence of a loved one. And those of us with dementia can die with a smile on our face and not a desire to get away from it all.
When one is mistreated , many of us tend to pull back and to isolate ourselfves from the hurt or pain. We can even come to resent indiviudals and our times together.
For many of us that are married, part of what we pledged before God, man and each other was to love and honor. Was that mere words or was it a promise. Were the words said to each other full of meaning that encompases the entire journey of life?
Just a bit of something to chew on.
August 23rd 2006
I was at the local YMCA with Sharon and some of my family. We had gone to swim together, mainly to watch the grandchildren swim, but the pool was closed temporarily.
My grandson Nicholas was at the Y with some of his buddies. Before I knew what was happening, Nicholas said he would be playing a game of basket ball in the gym with his friends and another grandson, Brian.
Of course I wanted to watch the game along with Sharon and daughter Mary Ann and her husband Dave. I think little Katie, a granddaughter was there also. Sort of a family gathering type of event.
By the time we got into the gym and found some seats, without backs on the bleachers, thought I'd complain for a moment... the game was well on. I guess bleachers don't have backs on them. Lots of laughs. I got the biggest kick out of watching my two grandsons make the baskets. Papa, that's me, was so proud. You could hear me from afar, I'm sure, cheering each time a basket was made. I even cheered for the buddies, because they were the kids friends, and had no cheering section except for me. Hey, they needed my support also.
What an exciting game for me. I don't get the chance to watch these not long ago little guys are now quickly growing young men of mine, play a basket ball game much. Oh, I watch them shoot hoops at times, even challenging them at the basket ball hoop behind our home, and shooting a few hoops with a basket ball myself now and then, but watching the kids play on the basketball court was a real treat for me. My grandsons are growing up so fast these days and I don't get to be with them near enough. This is a busy and exciting time in their lives. I just want to support them and for them to know that there old Papa loves them and is there for them. What a time I had.
August 24th 2006
This week marks the first anniversary of Hurricane Katrina, one of the greatest natural disasters to ever strike our shores here in America. "The images are still seared in our minds one year later; mothers holding their babies above water, seniors lumped in wheelchairs, and bodies floating down American streets." I remember survivors trying to get to the next state for safety and were turned back by police. I remember seeing those that were stranded on their roofs pleading for help. I remember how much time it took for our government and the state government to act. I remember how the head of FEMA at that time tried his best to get the attention of those responsible for assistance in this disaster to act, but he spoke to deaf ears. I recall how they knew early what was happening but did nothing. Was it really because many of these individuals were black? Was it because they were poor white? These thoughts linger in my mind to this day and I am deeply disturbed by them. Why? Why? How could this happen in America, land of my birth and that I love?
I remember hearing of hospital staff who left those unable to fend for themselves to their fate as well as nursing homes staff. I remember how long it took those responsible to make a house to house search and get food and supplies into the hands of those that needed it. I remember...I remember. America, that has such a short memory. Please don't forget this disaster and what actually happened here.
I remember how a president read a child's book as the flood waters rose. A person who later flew over the flooded land for a few minutes and then back to the safety of his home with only a few words and much confusion, it seemed to me.
I remember the promises that were made to restore that great state and how few promises, a year later, have been lived up to. I see how the survivors were and are still treated and mistreated. How they are deceived by those in control, with tax dollars paid by American's, held tightly and in control of our nation's leaders, as they give themselves raise after raise, living extremely well off of the funds that American's are forced to pay as our country suffers from lack and mismanagement.
I saw the blame game begin early on as to who was responsible for this mess and I saw one take the fall. It was said that there was enough blame to go around so really no one was held responsible for their dereliction of duty. We speak of crimes in far away places by those rulers, presidents, kings and dictators and those responsible for their people. The terrible acts they commit. To know and not to do anything about it is the worst crime. America, oh how our God must weep for a country who has been given so much and does so little to protect our own rights and so little to take care of our own people.
Apathy has taken over much of America as it sleeps on.When will we awake? I know not everyone will agree with me in what I have said, but in America there is room for more than one view and this is mine.Let's love America but not be blind to it's many flaws.Then I recomend that we do everything in our power to change what is wrong and support what is right about America
August 25th 2006
I wasn't done with my comments about Hurricane Katrina. I'd like to just add some thoughts to my previous remarks and comments.
I'll never forget what happened before, during and after the Hurricane. History will never forget what happened there, even though we might forget.
I also remember how the volunteers poured in from places far away to give help, some control and resemblance of life to those left behind by the terrible hurricane. The survivors. These volunteers brought with them hope.
America is great not because of our laws, our politicians, our political party, our flag or are emblems. It's not great because of our power. America is great because of it's people that care and give hope. American's as a whole really care about others and show it in their selfless giving and the sacrifices they make to help others. This great disaster brought together the worst and best of America. Out of the disaster came some good. We as a nation were forced to look at ourselves, our nation, our leaders, our divisions and prejudices and our promises that are too often not carried through with. If only for a few moments. We saw the poor and how they were and are treated and saw in contrast how the rich, famous and powerful are treated as well. Are there really two American's? God help us as a nation to reach back to our roots of goodness, fairness, honesty, faith and goodwill. May God help us remember that we were founded on a constitution for the people, of the people and by the people, not just a few elected individuals. May we have the guts to get rid of the bad apples in leadership which are many, the corruption, the good OLE boy system, and everything else that is destroying our nation along with those that pander to it, by our vote, not by violence. Let us reach for the stars and begin again living like the mixed family that we are and circle our nation with friendship, love and support, reaching even beyond our borders with the same. Let's put away our divisiveness and name calling, self righteousness and insist that the values upon which our nation was founded are obeyed and equal for the highest to the lowest of us. Let's reread our great constitution and insist on abiding by it, not adding to it or reshaping it, changing much of it's meaning. Out of this great disaster let a new America be born and may a better America spring forth. God bless America...and the world.
August 26th 2006
Poor Sharon. She never knows when I am talking to her. Many times she is in a different room and I am in another room, yet I am talking to her. I don't think to wait till she's in the room I am in before I begin my conversation. I just begin speaking. Some where in the back of the mind is the thought that if I don't get my words out right then, I won't get them out. They will be lost, long gone, or only a portion of the thought left. At times I write myself notes to give her my message once she reappears and that can work, but more than not, I just blurt out a thought or a half thought. If Sharon hears me saying something, she'll ask what I said or she may have just caught some of what I said. Some times I catch myself and I'll go to where she's at to speak to her, rather than making her come to me. I don't mind doing this when I think of it but many times it never enters my mind.
There's times I'm talking to myself or to the TV set, as if that makes sense. At times I am singing, humming or whistling. I might be on the phone. At times just a word or two comes out of me. Then of course there's the many times when my voice is so soft and weak that I can't be understood.
Our lives are full of constant adjustments, misunderstandings at times, give and take on each of our parts and trying to understand where the other one is coming from. A course in mind reading might help us both. Lots of laughs
In a couple rooms of our home, we have an intercom to talk into and that's a help when I'm near one when the thoughts come.
We seem to miss a lot of each other's thoughts because of our situation, but overall, I think we do quite well, inpsite of ourselves
August 27th 2006
Our pet house cat, Noel is a great source of fun and comfort to both Sharon and I. We've had her about eight and a half years now, buying her as a young kitten.
She's our baby, one might say.
Noel likes me to take my shoes or slippers off and give her a good rubbing with my foot. She's rolls over on her side or her back, many times putting her feet up in the air and her pawls curved. I usually know exactly what she wants and she reacts accordingly, letting me know that I was right.
Now Noel has an independent spirit about her and at times will lay close to my feet, but just far enough so I can't touch her. I'm unable to give her the TLC that she needs, usually wants and gets a lot of. At times she'll use my one foot as a pillow for her head. She doesn't seem to mind at all that it might not be the best smelling part of my body. Lots of laughs
Noel, in laying just short of my touch reminds me of we humans at times. We want attention, affection, touch and TLC, but we put ourselves just a bit beyond reach of receiving what we want. Were standoffish. Just a bit of a distance between us for what ever reason. There are times we come up to a person so that we can receive comfort and affirmation, but there are times also when we want to stand off a distance by ourselves, where we feel we can't be reached. We want our needs to be taken care of but build walls between ourselves and those that are eager to give us love. We can't reach you.
Walls we build, masks we all wear to disguise our true selves and feelings, can assure that our true self needs will never be met.
As stages increase for those of us with dementia, I hope that other's will sense our needs based upon our past, our personalities, and what humans need to survive, and will give affection and touch frequently and freely to us often. Soft chit chat in small amounts is also appreciated.
A pat, a handshake, holding hands, a hug or kiss doesn't cost another person much. Perhaps a little of one's time and being a little sensitive. Perhaps slowing ourselves down a little enough to care. I'm a toucher, a lover, a pleaser, one who does not like distance between two individuals. I enjoy closeness. I like to be touched. A soft encouraging word also helps me immensely. To be allowed to be fully human is all that I ask. I've spent my entire life striving to be fully alive and human. I've enjoyed that personal touch all these years. Nothing has changed. Just let me know who you are, approach me from the front, not the side or back, speak softly and you're attempts will be rewarded with openness, desire and anticipation.
August 28th 2006
While I'm feeling like sharing dumb moment's I have, I thought I'd tell you about an incident that occurred some time back.
It was early in the morning, eight to nine o'clock is early for me, when I was making my morning cup of coffee. Now, I usually have no problem with my one cupper coffee pot that I use. It's pretty simple to use, really...usually. That morning I was eager to get to my first cup of the day. You may know how that is. I threw away the filter from the day before and was putting coffee and my sweetener into the coffee maker. I then put a cup of water into the coffee maker. I noticed when it came out into my cup that it consisted of water and coffee grounds, along with my sweetener. It took me a few moments to figure it all out, but ever so slowly, the answer came. I had forgotten to put the filter into the coffee pot for the coffee grounds to filter through. Needless to say, that cup was thrown away and after washing out my cup and the coffee pot, I put a filter in this time, before putting my coffee and sweetener in. Worked much better for me this time, and a short time later, I was able to sit back in my easy chair and enjoy a nice cup of coffee. The way a morning should begin.
August 29th 2006
Sharon and I have the nicest house guest visiting us. Her name is Hallie. Hallie is a Schnauzer Dog, Her owners are Charlene and Charlie. They are good friend's of ours. Charlene just lost her mother and had to go out of state. To our great delight, we get to care for Hallie for about five days. Time for me usually flies, but I hope it slows down a bit, giving me time to enjoy our house guest.
Haley is the nicest, friendliest, well mannered dog I've run into in some time. Time spent with Hallie is well spent. Were quickly becoming attached to Hallie and will regret when the time comes for her to return home with her mommy and daddy.
When she goes home, we'll just have to find extra reasons to visit with Charlene and Charlie and of course, Hallie.
August 30th 2006
My breakfast is usually a sandwich or an occasional bowl of cereal or a surprise from Sharon.
Let me share with you a bit about my breakfast sandwiches which I say with humility, are the best there is. They usually consist of the whole wheat bread, on occasionally a whole wheat bun, and an assortment of meat, cheese, pickle or relish, and ranch dressing or some type of mustard. Now on occasion I use in addition, an egg or so on my sandwich. Oh my... My sandwich is different each morning it seems, but always...always very tasty.
I collect mustards of different types of flavors and brands. They are each so different from the other. My grandson, Nicholas makes fun of my collection, eating nothing but yellow mustard himself. Yellow mustard is just one of the many that you can pick from on the store shelves. I can't entice Nicholas to try any of my great flavors except yellow. Oh well...
A new mustard Sharon found for me is Brown Sugar and Pecan Mustard by Sarah Lee. What a fine, fine blend it is. I highly recommend it for those of you who haven't tried it yet.
I learned my Dagwood specials from the best, Dagwood Bumstead himself. Ah, he knew how to do it. Just look for him in your funny paper section of your local newspaper. You may have to look under the title of Blonde, his wife.
I've closely observed Dagwood now for years, learning many new ideas and talents from him and maybe...just maybe a few bad ones. I hope Dagwood lives forever because I have much to learn and enjoy from him yet. He's such a great instructor in life skills.
August 31st 2006
Voting day is just around the corner. I'm beginning to get political fliers in the mail, phone calls, information on my computer and political advertisements in my local newspaper, all doing their best to get my vote.
Not long ago, I was ignoring all this unwanted information, it was to early for me and the politics of voting seems to begin earlier year by year, but now that time is getting close, I am ready to listen to what the politicians are saying and what is being said about the politicians running for offices in my area and state. I'm also looking for important issues that are not being talked about.
I want to know not just what they are saying, they are politicians we know, but what they have been doing, if in office and even what they've been involved in out of office. If there is a voting record, I want to know it. If they've been in a scandal, I want to know it. If they have a criminal record, I want to know it. It tells me a lot about what they will be doing if elected or reelected to office.
I've been observing and participating in politics enough years to know that there aren't many honest, law-abiding, citizens rights centered politicians. I hear what they say, usually loud and well, not very clear, but I want to know what they believe about what's important to me, my family and my community. For me actions speak much louder than words. I've heard enough promises that have never been carried out. I've seen the corruption and buying of votes. I've seen the lying and deceit. I've seen how tax dollars are wasted and how elected officials live laviously on tax papers dollars. Now, I have to look deeper into their lives. I am not bitter about politics. I feel it has made me better and it has given me a deep desire to see my country to my local area change directions.
What party are they? This really doesn't always reveal what kind of politician they will be. Are they religious or "Christian?" Do they wear it on their sleeve to get votes? Do they use the flag to get votes? Doesn't really mean much in this day and age. There are so many masks politicians wear and so many with just the right words, but not touching what's going on in the real America. There are so many ways people use to disguise what they really believe and are all about. There are many with their own plans and agendas. Many that do not believe or follow the American Constitution.
How does the average American ever dig there way through all this mess to come of with the right, best choice? How does someone with dementia do it? I just do my best and continue my right of voting. It's getting more difficult for me each election season. The mud that is thrown at each other is disgusting. The negative approach rather than the high positive approach. There are those that follow on the coat tails of other politicians and those that are from certain well known political families. Then there are the pretty boys or actors. There are those that use just the right picture opportunities. Why is it that we vote by looks or family names or some one's faith? Many churches and unions tell their followers who to vote for or what party to vote for. Are we brain dead?
And then there are the fear factors used on us, the us vs. them. The issues of homosexuality, marriage, abortion, death and dying issues, immigration issues, insurance issues, death penalty issues, insurance and employment issues and poverty issues. Racial issues. The Christian verses those heathen out there. How sad. How very sad that so many American's feel and think this way. Why allow these things that divide us to keep us apart and from coming together for ours sakes and the sake of our nation.
I look at my political affiliation roots and how my chosen party represents the interests of America today. I look at my faith and the social implications of it that I see in the words of Christ. I look at the issues of the day and then I vote my conscience with the American Constitution in view. I see how our nation is going, how my state and community is going and I want some positive change. I know most American's only remember the news briefly and know little about history. That's not a put down. It's a known fact. This can really affect our vote. In my heart and mind, my vote must be cast on saving the America I love from certain death. Not voting because that's how my parent's vote, or my friend's vote. This is a decision only I can and should make between my God and myself. My votes are far from perfect, but after serious consideration of all sides involved, I cast my vote with a free conscience. Just some thoughts from my heart to yours. Please consider voting your conscience, not forgetting the American constitution and the neighborhood, community, city, state and government.
I'm remembering in America, there are many different peoples and many different views of life. Not all of us think the same and I respect the choice of other's. If we vote or not, it's up to us. I do hope that all votes are counted honestly and reported correctly and that what ever the outcome, we can live with peacefully.
to My Journey