January 1, 2007
Did I get the year right? I worked on it. Now, if it would only stay with me. Lots of laughs.
I'd like to apologize to those of you who read my journal and have not seen a current one for quite some time. I beg your forgiveness and understanding.
As my disease and health get worse, there are periods of time that I just neglect journaling. I won't bore you with the long list of my conditions that have prevented it, but I will say that this last year has not been the best one for me for health.
I've just recovering from having had minor surgery on an umbilical hernia. The recovery took longer than expected but went well. I'm finally getting some of my strength back and am able to do a little more of the things I need and like to do.
I won't quit journaling completely till I can no longer do it. I'm not finished sharing with you, joking, laughing, commenting, giving a few personal opinions at times and a few complaints and ideas that have worked for me. Journaling, opens up ideas and thoughts, brings back memories and helps me explore my life, and can even help bring closure in some situations. At times you may find a few complaints or ideas that have worked for me. I try to be transparent, open and non judgmental. Journaling is my way of sharing with other's. Please join with me as I travel this road called life t It's been quite an adventure for me so far. I find that most adventures are to share.
January 2, 2007
My daughter Mary Ann just called me. I answered the phone and began to talk with her when I discussed my music that was playing was a little too loud. I reached for the remote control aiming it at our TV set to turn the sound a bit so that both of us on the phone could hear better and not to annoy my neighbors with the loud music. The remote did not seem to be making the music any less loud. After messing with the remote control, the thought finally came to me that I had the stereo on, not the TV set, and that was the reason I could not get sound of the loud music to turn down. Lot's of laughs.
One would think I would learn my lesson, but it seems in the not to distant past, I've attempted to do the same thing.
January 3, 2007
My back has given me fits on and off since somewhere in the 60's. I've had a lull for a year of so but the pain has come back with a vengeance. I've complained enough to my family doctor and loud enough that he has taken notice, ordering a full back x ray. It showed what former doctors have told me in the past. That my back is full of
Arthritis. There are many different forms of Arthritis and many American's suffer with this disease to some degree or another.
In the past I've had pain pills, muscle relaxers, masotherapy and chirotherapy. It seems that some of this disease appears in my hands and feet. I grew up in a very damp climet, Ohio and many in my family had or have this disease.
Doc told me that as soon as I get recovered from my minor surgery of umbilical hernia, he will start on my Arthritis, he will begin working on my back arthritis. Presently I'm using Lidoderm patches on my back. It's suppose to be placed on the areas of pain resulting in some difficulty since my back is in pain fom my neck to my waist.This gives me some limited relief.
Any suggestions for relief would be appreciated.
January 4, 2007
I am still thinking about the new year, 2007. I just had to go back and change the year. Lots of laughs. 2006 just came out of my mind automatically and at times, last year did not even register with me. Oh well...
I enjoy the new year celebrations and festivities. For some this time of season is a new year, to some Kwanzaa, some Hanukkah and to others Al-Hijra, the Islamic New Year. I respect each celebration and hope that it brings peace, love, joy and laughter to all. Someone once said that she wished her family just enough. Just enough of life with all it's elements to meet our needs, make us thankful, keep us humble, to enjoy and to share with others. Just enough that we keep our focus on what's really important in life and who is important in life. I wish all just enough.
Sharon and I made it till midnight. I don't know how we did it. Now, Sharon is a night owl and has some good hours after I'm sleeping. My necessary habit is to go to bed early on. Around nine p.m. usually. Still, New Year's Eve is a time of celebration for us and we stayed up listening to music, watching a movie, lots of traditional foods, oh my...how tasty they were, and ended it watching the ball come down on Time Square in New York City. The beautiful words and music of Old Lang Zine going through my mind and heart.
As we try to remember the good times of last year and yesteryear, our family and friends, I look into the new year with hopes for world peace and that those that are suffering will have their needs met in a positive manner., I'm hoping and dreaming of change, a turning point that will change hate to love and peace and will make the world what it can be for all of us.
January 5, 2007
I still have some lingering thoughts from Christmas. It was so enjoyable for me. On Christmas Eve we had the family in for finger foods, deserts and opening of presents purchased by Sharon and I for the daughters, their mates and grandchildren.
The following day, we normally have dinner here at our home together. This year we decided that all the preparation had just become to much for Sharon and we were then invited to both daughter's home to eat and enjoy. It seems we are being forced by age and condition and stress to make this switch in routine, although down deep, I would prefer to still be able to have the family here in our home on Christmas Day for dinner together with all it's tradition that goes with the celebration.
I remember some years ago when my parents had to make this switch of Christmas dinner and celebration to the home of other family members. It reminds me of the long hours that my Mom labored in the kitchen to prepare the delicious meals she prepared and the joy of being together as a family.
Changes come even with holiday traditions but presently I still have the memories of Christmas past. I pray that those memories continue to linger for a long, long time.
January 6, 2007
Shawn, my 12 year old Grandson, stayed with us today while his Mom went shopping. First Shawn wanted to play with a Lincoln Log set while I watched. This seems to be something he enjoys. May turn out to be a builder, who knows?
After a while Shawn drifted to the computer for a skate board game. I had told him that after he got done with the computer, I would play him a game of his choosing. We had a closet shelf full of table board games, etc., for the Grandchildren and us, at times. Shawn chose Dominoes. Now, I hadn't played a game of Dominoes for some time but, it was his choice.
The first game, Shawn won fair and square. I could tell he was pleased. I made only one mistake in the game that we knew about and Shawn called me about it. He was right. I had made a mistake with my counting.
I challenged Shawn to another game to give OLE Papa a chance to match his skills. Somehow, some way I beat him that time. We ended up giving each other a high five.
If I'm feeling up to it at all, I push myself do play a game with my Grandkids when they come to visit with me. It's a good way to bond, to laugh and have a good time and a way to make memories, not so much for me because my memory is so short, but memories for my Grandchildren.
January 7, 2007
I was thinking of proper etiquette for the using of phones in homes where dementia is a large component.
From my personal point of view I should not be answering the phone. The reasons are many and I will list a few of them.
1. I easily get confused when I'm on a phone.
2. When the phone call is over, many times I forget who just called.
3. I can give inaccurate or incomplete information.
4. When taking a message for someone, I can put incorrect information down.
5. My notes can be unintelligent and easily misunderstood.
6. I can lose the note I wrote the message on.
7. I can forget to take a message.
8. With my soft voice due to my Lewy Body Dementia, many times I can be misunderstood or not understood at all.
9. Because of my voice problem, some individuals hang up on me thinking they reached a prankster. This can be upsetting for me.
10. I can misunderstand part or all of a conversation.
January 8, 2007
Etiquette for caregivers that include respect and dignity for those affected with dementia is very Important.
1. After a phone call, as soon as possible let the affected individual know who has called.
2. When phone call was family or friends, give affected individual some basic information regarding phone call.
3. Don't forget that the affected person in the home may just want to say a few words to the caller before phone call is concluded.
4. Make attempts to include affected person when possible with those important in their lives.
5. Should affected individual want to add to your conversation with a question, suggestion or greeting, allow interruptions without showing resentment.
6. Give only information to affected individual that is not overly upsetting for them.
7. Make phone calls requested by affected individual that are within reason, with kindness.
8. Ask affected individual on occasion if there is anyone they would like to talk to by phone.
9. If phone equipment is varied and or complicated, simplify if possible by notes and sitting next to individual if needed.
10. Make this a pleasurable experience for affected individual.
11. Don't be afraid to ask for affected individuals imput regarding phone conversations and any difficulty they may experience.
12. Attempt to correct any problems within a reasonable amount of time.
January 10, 2007
Sunday was a unique day. I was more aware than I think I am sometimes of my tremors or shaking in my hands. At least that is where I notice is mostly. We were sitting in church. It was prayer time and I was holding my wife's hand as the Worship Leader began the morning prayer. A friend had sat down on the other side of me. Her husband who normally attends with her was not there today. I had noticed previously that she had tears in her eyes during the earlier part of the service, so during prayer time, I reached over and gently took her hand as well as my wife, Sharon's hand. As our eyes were closed I noticed that my tremors (shaking) hands were almost uncontrollable. I felt them. I knew Sharon felt my hands shake and now my friend, I was sure felt them shake. Both ladies kept holding my hands. My mind had gone from the words of the prayer to my loss of control over my tremors. My Sharon probably feels this movement each Sunday but my friend did not, so I whispered to her after the Amen that the shaking was a result of my dementia. She smiled and seemed to understand. I never know when I'm gone to have tremors but I do know they seem to be more frequently unwanted guests. I try to hide my shaking but at times, I'm sure other's notice. They are just polite enough not to mention it. Me, being overly sensitive about the matter of being noticed, would do almost anything at times to conceal it. Why do I react this way? I don't know. For years I've worked on just being me and being transparent. I thought I had made progress but at times like this, I see that I haven't made as much progress as I would have liked. I'm sure some of it is pride. The shaking makes me feel weak, very weak and out of control. I guess I don't want other's to see how out of control I really am.
Later in the day while eating here at home, I dropped my fork onto my plate while I was eating a meal. This has never to my poor memory happened in the past. I picked it up quickly, not mentioning it to Sharon. But I knew what had happened. My hands were shaking and the fork fell right out of my grasp. Is this what I have to look forward to? More of this? Loosing more control? This is one of the symptoms of my Lewy Body Dementia. I've seen it occur in some of my friends with Lewy Body Dementia.
I guess today, it hit home in a way that I was not able to cover over and it bothered me. Bothered me a lot. Having no control on my symptoms, knowing at times like this what is happening makes it all the worse. This particular day I would rather have not know what was happening to me. I'm finding more and more that knowing is not always my friend.
January 11, 2007
Today was a good day for me. I was able to spend time at a near by Barnes and Noble Book Store while Sharon attended to other business.
I'm no stranger at this Barnes and Noble Book Store and enjoy spending time there whenever possible. It's a good place for me to be while Sharon has other things to do. A place where I can't do to much damage or get into to much trouble. Lots of laughs.
For me, it's like a super sized library with all the latest books, magazines and newspapers. An added attraction is a coffee shop and comfortable furnishings to sit on while browsing and getting lost in adventure, self help and medical books, books on politics and religion, inspiration, historical, social issues of the day and on the list of interest goes. Some are thought provoking, anything that might strike my fancy. I might just read the cover of the book, a particular chapter, at times the first and last chapters. Many times I just end of skimming the material in my hands. A bit here and a bit there. At times portions of the material and on other occasions, based on my interest at that moment in time, I read or skim more of the reading material.
There are times that I just can't lay the material down and will end up purchasing it and brining it home with me for additional reading.
For these moments in time, I can get lost in the words, the thoughts and the images. At times I day dream, at times I connect, at times I note on a pad I carry a thought to take away with me. Often the words and thoughts are left there at Barrens and Noble Book Store, due to my having forgotten portions or perhaps all of what I had just skimmed or read but there are those times when I take something new home with me. For me, the time I spend at a bookstore or library is time that is well spent. The time is never lost. I am using my mind, pushing and probing thoughts and as I attempt to briefly stay focused. For me this time is relaxing and many times I find it to be refreshing and stimulating. I refuse to allow dementia to rob me of this joy.
Publisher Charles Scribner, Jr. said "reading is a means of thinking with another person's mind; it forces you to stretch your own."
January 12, 2007
As a child I looked for heroes. As a teen and young adult, I continued to seek them out. Still today I look for heroes but I've found few.
Martin Luther King Jr., one of my heroes. During this time of unrest and uncertainty in our county, he still stands tall as a shining example of how to change was it wrong in a nonviolent manner. Today is a time when division and corruption rule the day. Evil is rampant. I find it refreshing to look again at the life of Dr. King. His period of time was much like today. A day when only a few took a stand against the wrongs of the day.
Still today there are only a few that take a stand against the ever present evil in America and across the world. We hide behind our masks of intolerance, selfishness, and indifference.
I only wish that I was aware as a young man as I am this moment of how messed up my world really is. I make feeble attempts with emails and letter to share my deep conviction of peace and needed change. At times I think I have waiting almost to long to make much of a difference. And then I think of the quote, "little is much when God is in it." The little I do along with the what other's do can make a difference and bring about positive change. This I believe.
Martin Luther said, "History will have to record that the greatest tragedy of this period of social transitions was not the strident clamor of the bad people, but the appalling silence of the good people."
Not much has changed today. The silence is still almost overwhelming. Silence from good people is inexcusable. Let God be our judge and history record those who dared to risk taking a stand in living out the love of God in our world. Let the waves of peace and justice roll across our land and around the world.
January 13, 2007
I learned in my mid teens some where that one had to step out, to dare, to risk themselves to taste and enjoy life. I did so hesitantly, slowly at first, step by step and small ones at that. The more I took risks, even the smallest of steps, the more I was able to take the next risk. Some of those risks were checking out the world and finding it to be worth while living. I risk friendships and found friendships in return. I risk stepping out into a life of faith and found life, exciting and fulfilling life I risk leaving my safe home in the country for city living. I risk and found education to be my friend. I risk with love and found that it began to fill an unmet need in my life, broadening out from myself to others. I began to risk talking and getting to know those of other nationalities, cultures, religions and life styles. The self made walls and barriers I had erected began to crumble.
I continued to risk and more than not, found it very rewarding. I became braver with each risk and found I wanted to risk more of me. I liked risking. Today, even with dementia I still take risks, reaching out, touching, tasting, making new friends, changing church denominations, volunteering, donating, giving of myself, but I feel that I've received far more than I've ever given or ever could give. It was not the easiest thing for this shy, hurt country boy to reach out, to risk. It didn't happen over night. First it was a thought that grew in my heart, mind, and then it actually happened. Not by accident but in willing it to happen.
With dementia I still takes risks. I can't say I haven't ever regretted a risk or failed in risking, but I can say I'll never give up risking. My risks are smaller today and perhaps less due to my condition and circumstances, however I still look for ways and places where I can risk. For me the successes far outweigh the failures as one risk themselves to the wonders, beauty and good things that make up life.
Paulo Coehlho said that "you have to take risks. We will only understand the miracle of life fully when we allow the unexpected to happen."
William Jennings stated that it is only by "risking our persons from one hour to another that we live at all."
Something to pause and to think about.
January 14, 2007
Survival skills. For years since being diagnosed with dementia, I have been a part of support groups, computer groups, educational classes and lectures. I have learned much on how to survive with dementia. Without this knowledge and support received, I don't know how I would ever have survived to this day as I have. I've had dementia since 1997. I'm not bragging or complaining. Just an observation.
I've discovered that not everyone is willing to learn about the skills that will take one through the changes and effects of dementia. Not everyone affected will reach out for help. There are many reasons given, but according to those having dementia here in America, support groups and educational classes that I have attended or known of are poorly attended.
One of the first things I wanted after being diagnosed with dementia was a support group followed by classes, lectures, obtaining information on the computer, reading books by those having dementia, caregiver's and family of those with this terrible progressive disease with no cure. There were magazine and newspaper articles. Sharing and learning from other's affected by the disease and from doctors, counselors and employees of the Alzheimer's Association.
I still have much to learn about this disease. How to survive form day to day. I'm still wanting to know more about surviving in the long good bye, moment by moment. As the stages change and the confusion comes, I don't have all the answers and many times I don't even have the questions to ask. For us to survive as well as possible we need the support of the Alzheimer's Association. We need a caring, supportive caregiver and much support from family, friends and community and a well chosen medical team. We need each other and be willing to reach out, hoping that other's will be there as we reach. In my personal life I have found much caring support and education, exceeding my expectations. I'm certain you will also.
January 15, 2007
A near by elderly gentlemen with dementia living with family was recently lost for some time. He was discovered missing from the home a few hours after he had wandered off. The local Sheriff's Department, many workers and other's went looking for the gentlemen. He lived in a small housing area along Dunn's Creek and the St. Johns River along with rural and wooded areas.
Neighbors heard someone yelling for help. The Sheriff's Department was finally able to locate the man in an isolated area, sitting in the water that was cool and contained many alligators and who knows what other creatures. He was taken for care to the hospital for hypothermia that had set in. The woods that he had walked in getting to the water was infested with poisonous Florida snakes.
Here in Florida, we have many dementia individuals living at home with little assistance to keep them from wandering and few services for them or their caregivers. One might think that the state with a large older population and many dementia individuals would offer more assistance but sadly, this is not the case. Your efforts and support to change this situation would be appreciated.
This gentlemen was fortunate that his fate was not much worse than it was. I only hope that the family took some measures to protect my friend from wandering again. With the best system put in place by caregivers, those with dementia can still wander. Some ideas on protecting those of us who wander might be half doors, alarms for windows and doors, or and an identification bracelet. Notifying neighbors and local law enforcement officials of the person's condition. Nursing home is not always the answer to wandering. At times a home can be made more dementia proof with a little imagination and knowledge from the Alzheimer's Association and other's that are affected by dementia in their lives or profession. I think a little creativity can also help for those who wander.
January 16, 2007
I was thinking about my life and what it is to me. To some, it's just another day on the calendar. Another day of the year. A day they have to endure, to get through. A day to get over with. A day of illness or disease. A day of boredom or work. A day to survive. Hate Mondays and live for Fridays, weekends and vacations type of life that passes all to soon. I've been there.
For me life is a journey that I am on. That I've always been on. It took me many years to really realize this truth but gradually, there was an awakening within me that I was on a journey. An adventure. Through the ups and downs of life I could see a pattern and I could see meaning to my life. It didn't happen over night. It was a gradual process as I took my journey with meaning...real meaning.
Was I like a fly on the wall with a short life span? With one whack of a fly swatter aimed just right, life could be suddenly over. Was that all there was to it? I discovered that there was so much more to life than that and am discovering more meaning each day that I live.
Daily Bread stated recently in one of their daily devotions that "to see God's hand in everything makes life a great adventure." Through sunny days and dark days I travel on my journey. Through depression, illness and disease I go on mile after mile but I travel lightly with love, laughter, joy, peace and the good Lord.
I'm not afraid of life. I love life and am filled with contentment and joy. I feel the pain other's feel, but I also see life through different eyes. I see life as good.I don't wear sunglasses or travel blindly. I see the bad and the pain in life but life still is good.I work to change the negatives in life while I travel on.I travel my life, a gift to me, to the beat of a different drummer. That drummer is as close to me as I allow Him to be and being the Creator, he knows my map and has the best intentions for me. When I follow Him closely, life becomes a journey and an adventure. It all happens when we make a choice, a choice that can change our journey's into adventure and a great journey, through it all.
January 17, 2007
I've been thinking about independence on a personal level. I realize that in so many ways I am dependent on my caregiver and wife Sharon, along with other individuals. This is mainly due to my condition, disease and possible a bit from my age. Since 1997, this dependence began slowly and has gotten greater as the years have gone by.
I believe in independence when possible. Freedom from dependence on others. It's sort of "a spirit of self reliance."
I realize that I need lots of assistance and am ever so grateful for it but still, there's things I can do for myself. At times it just takes reminders from my caregiver and others. It also take follow through from them. At times, it seems making me independent to some degree, make it more difficult for them and can bring about a reluctance on their part to add more to their already difficult load they carry.
Notes, a calendar that I can follow, phone numbers by my phone, a list of small chores that I can do. These are only a few of the things to at this point in my life, can assist me in becoming a little more independent.
I'm listing other things that help me or could help me toward more independence and a feeling of worth. Things that can at times bring about positive results for both my caregiver, other's and myself.
An alarm clock set each evening placed in my bedroom so that I can get up in the morning by myself.
An alarm clock set by other's to get me up from daily nap times.
A clock with large numbers where it can be easily seen.
A cell phone used by both caregiver and myself to keep in touch during the day, for comments and or questions that I might have.
A cell phone that I can carry with me when I'm by myself.
An identification bracelet worn at all times.
Personal information carried on me at all times.
Speed dial put into my regular and cell phone for conveyance.
Long distance phone calls made easier for me to make.
A pad and pen kept by each phone, desk, pocket and the area where I spend time.
A list of chores kept where it can be seen readily by me.
A pet for companionship.
A support system of caring individuals.
A person that is a caring, confidential individual to bounce ideas, problems and just chit chat with.
A support team of other's that have dementia.
A faith support system.
Volunteering when able.
Fresh Air time that suits one's stage.
Outings during week.
Daily encouragement to be independent without nagging.
My abilities and energy level as well as stages can change from moment to moment, day by day, and this fact needs to be part of helping me be more independent.
I'd personally appreciate more ideas and suggestions on how I as an individual with dementia wishing to be more independent, can progress on this path. What has worked for you and others? Your reply would be greatly appreciated.
January 18, 2007
Before I send my daily journals to my webmaster, Tay Austin, I go over them many times. I reread the journal and the do spell check several times. I check my paragraphs and punctuation and make sure what I've just said in my journal is exactly what I meant to have said. I then make a copy for myself, and push a button sending the original journal off to my friend, Ms. Tay, and a copy to my wife and caregiver, Sharon.
There are times that I have a chance to look back at my old journals that I keep. Sometimes I am amazed at the mistakes that I find on some of the pages of my journals. I know I'm not perfect in my journaling, but the mistakes I find that I have made can be frustrating for me. I thought I had it right, all right but not so.
By rereading my journals, I find out that on occasion, I have messed up. Usually not big time, but enough that I've discovered the mistake, or more, but it's to late to correct it. I had tried, but my attempts were not good enough. I find this not only in my journaling, but also in other areas of my life. I think I've got it finally, did a pretty good job for me, was pretty proud of my attempts and then reality sets in and I see how imperfect I am, how many mistakes I make and at times, how my rose colored glasses can keep me from seeing what's really happened or is presently happening. I guess it's just one of the many things that happens in my life to help keep me humble, if I like it or not.
Perhaps seeing our imperfections is not that bad for us. It shows us how human we really are and how mistakes can be made, at times over and over again. There are times that I ask myself if I'll ever learn? If I'm looking for perfection, it's never going to happen, bit I'm not. In fact, I've never been perfect and make many mistakes in my life. I am me, myself, an imperfect human being, doing the best I can. Mistakes will be made, little ones and big ones as I journal along my journey, but I'll continue to give it my best and promise to keep checking and double checking for errors in my journaling.
January 19, 2007
I was just thinking about interrupting others when they are talking. I've been doing it and I don't like it. In the past I would not think of interrupting others when they're talking to me or others. I just instinctively knew that certain acts of behavior was not acceptable by myself or others. But...for some time now, I find my communication etiquette is being messed with by my dementia in a way that is distressing to me. I am not always able to stop and think before I act.
When other's are speaking, before I know it, I interrupt the conversation. This does not occur in every conversation, thank God, but enough for me to notice. The etiquette that I once was taught at home, and that was automatic with me through time, the years of listening to others and then adding a bit of conversation, is slipping away. When I catch myself, I am able to say excuse me or I'm sorry, which I really feel, and am able to back off from my offensive behavior. Some where within me I also know that when something happens to pop into my mind, if not quickly, the thought is gone, usually not to return to me. That's when I catch myself. Other's are very kind and I sense that they understand my situation and lack of control issues. I on the other hand expect more out of myself and maul over what has just occurred, I tend to hold myself to higher standards than I hold others. I expect more out of myself.
I also notice that while other's are talking, I'm not giving other's the courtesy of my undivided attention. Many times I am spending this time thinking of how to respond, add to the conversation or be a part of it. To understand conversations, to hear them completely and then to remember thoughts or discussions is difficult enough for me but when I'm rude on occasion, I find I'm either attempting to guard myself from this action, or not giving enough attention to my actions, in spite of knowing better and desiring to be a polite conversationalist.
To add insult to injury, I even find that on occasion I will slightly slobber. What will I find to do next? These times are oh, so embarrassing to me and I don't know how to respond without drawing more attention to what has just occurred. My thinking process has been slowed down considerable, taking much more energy from me and a lot more effort on my part. When you add this to my soft voice that has come with my disease, making it difficult for many to understand, again embarrassing me, extra problems are created for me. Am I just overly sensitive? Perhaps...but there's little I can do about it. I'm already on all the medication that my doctor can safely prescribe. It helps me but there is no total answer for dementia. What's available for me does not come close to solving my progressive disease and how it effects my o daily life?
One of the difficulties I have with Lewy Body Dementia is that I observe to much. As I've been told, I know to much. Many seem to not recognizee what all I really don't notice or know. That occurs more when individuals are with me for longer periods of time. With Alzheimer's Disease, many times the individual is oblivious to what has just occurred, we with Lewy Body seem to maul things over, at time observing things that other's might see and quickly go on their merry way. Attempts are made by myself to control these issues and situations that keep changing constantly, at time disappearing and then reappearing at an odd moment in time, and then there are times that I see the change in me, and feel helpless to do anything about it.
Living daily for those of us with dementia is quite a challenge. A very tall order. There is little information or attention by the Alzheimer's Association on the how to maintain life on a moment by moment, daily basis. At one time challenges were met with positive thought and the ability to work out workable solutions. Those days are fading fast and at times I wonder what's coming on the next mile of my journey. I'm holding on tightly to hope, faith and who I still remember that I am.
January 20, 2007
Who am I? Who was I? As a teenager or young adult, I'm constantly going back and forth between the two.
My mind and memories seem to play games at times going back and forth between me and my childhood, teen years, young adulthood, middle adulthood and now my older years and disease. I thought just flew by so fast I could barely catch it, a flash of yesteryear, bits and pieces of yesterday, moments of today and thoughts of tomorrow and my future. Only partial. glimpses. I did not get a good look. They travel so qucikly.The glimpses, ,just like my days fly by so fast that I only see for what seems like a moment and then they are gone
It's not like I try to travel to these time periods in my life. Oh on occasion I do but usually It just happens. It can be a brief momentary thought or it can last a little bit longer. I don't understand it. At one time I would have torn this thought apart with my mind and heart to find some answers, some meaning, but that time is mostly gone. Answers are few and finding them usually isn't going to happen. I can't fix things and make them all better like a father giving a hug to his son or a mother giving her small child a kiss to make it better and all go away. It's not going away. There is no cure and it is progressive, ever moving.
This long good bye stuff snuck up on me gradually, ever so gradually. For a while many didn't even notice although somehow I noticed something was wrong.
some would tell me, "you don't look like you have Alzheimer's Disease" "You don't act like you have Alzheimer's Disease," " You can't possible have Alzheimer's Disease."
On the surface level it would give me a brief bit of hope that, well, perhaps I don't have the awful disease after all. Maybe it's something else. The thought would be brief however for me, as down deep I knew what I had. No wishful thinking would ever make it go away. My caregiver knew what I had although she to had false hope at times, hope that seemed to come and go. After being with me for a time and not just a brief look from the outside, people knew what I had. The doctors knew. The experts were more exact with it's name, even changing it to Lewy Body Dementia instead of the feared early stage Alzheimer's Disease. It took many years for that to happen, many exams, tests and much time in their office. Lewy Body Dementia is just as fearful and devastating as Alzheimer's Disease or other types of dementia.
Has what I have changed who I am? On the surface, perhaps it has, but not the real me, the down deep Chip has not and will not change. Many things have changed since that first diagnoses in 1997 at age 50. Many changes have taken place and continue second by second, moment by moment, back and forth, up and down. This ever changing will continue, but the core of man, my soul and many of it's characteristics will remain. I remember...I remember who I am and it's not the disease with a name. I am me and somewhere deep within, I'll always be me. Please never forget that. As the light gets dimmer and more changes occur, when I can barely be recognized, please remember I am me.
January 21, 2007
What happens to me when I no longer remember who "me" is? Who I am? Will I somehow be able to reach out to you, to connect in some verbal or non verbal way with you? Will you want to be around someone like me? Will I be remembered?
I know how difficult it is to be around someone different, unusual, difficult, depressed or with drawn. Someone that has a disease or is ill. I know from experience that it's not easy. I love that person, want to reach out to them, to connect, but it's very very difficult. It's much easier to distance oneself. To not connect, to not join in the suffering and pain. To stay away. To try to forget. It can be so painful for us but what about the loved one? The person your working with? That Mom, Dad, family member, relative or friend. What about that stranger? They won't notice...won't know if I don't show up at their home or nursing home. If I just slip in and back out, they won't know me anyway. To soothe our conscience, we have to at least do something, don't we?
Our those with that are in mid and late stages brain dead? Do they have any feelings? Do they observe...notice things?
Do those in comas know things, hear things, somehow...some way remember some things? There's so much we don't know. We can think we know but do we really?
Although closeness, especially one sided closeness can some times be painful, I've found this out personally over the years, that there is another side to the coin, to the relationship. I know. I'll remember. I'm still a human and no matter how much I've buried my emotions and feelings, relationships effects me.
All humans need relationships. Even those of us with dementia. Even those in a coma. No man is an island unto themselves. We need each other. God told Adam that it is not good for man to be alone. He was speaking about Eve but I think this is true for all of us. We need contact with each other and the rest...well, it sort of takes care of itself if were only open to the possibility.
Not to make you feel guilty but...but what is guilt based on? When one is gone, it's a little late to try to mend bridges, to fix things, to get close to someone, to take care of unmet needs. to say I'm sorry and or I love you. Perhaps.. I forgive you or please forgive me.
Perhaps this time in our lives is painful for all concerned. Each of us can only deal with these issues ourselves, personally and at our own pace. And then we must live with our decisions.
January 22, 2007
If one would just think to ask me, I'd be more than happy to do it. I think that those of us with dementia up to a certain stage, want to help around the house. We want to participate in the chores, maybe carry in the groceries from the car after purchase and bringing them home, maybe washing the car windows at a gas station, how about washing and drying clothes and the dishes. Then...folding and putting away the clothes and the dried dishes etc. When were feeling good and rested, or even partially good and somewhat rested, I personally would rather be a part of the home situation as much as possible. I'll never do as much as my wife, Sharon. Never. Even before I was diagnosed and still working full time, Sharon did most of the work in the home. My work was so exhausting mentally and emotionally plus many times being on call around the clock, I could only do so much. My time and energy has limits to it. Usually we found that the outside of the home was mine and the inside was mostly her's. I also did most of the driving.
Without a routine, a schedule and someone to remind us what to do, at times chore by chore, there are so many things I'm not going to think about. Doesn't even enter my mind. Am I being lazy or uncaring? I don't think so. Am I taking other's for granted? When you have a memory like mine that changes moment by moment, not thinking or following through on something is normal for me. Do I like it that way? Absolutely not, but I think there are few that would want to trade me places with my health situation. Not if they really understood mind and heart, what we really go through daily.
Some things we just should not be put in charge of. Our routine is one of the many. I use to be called a self starter. It was put on one of my employment evaluations by my boss. I could follow through without little supervision and knew my job well. That ability slowly began to change until today when much of it is gone. My fault? No. It's not a person's fault. It's the process of our disease that is constantly changing.
I don't like it. I'm sure my wife doesn't like it, however I do not feel guilty about it or less of man. So....., caregivers or other's must be in charge of our daily routine, and observant enough to know what we can do and when we can do it. Follow through on a caregiver's part is also essential. It might just take a lot of attempts on our part and a lot of patience on another's part, but when we work together, as my Dad use to say, " We'll work together in all kinds of weather, to see what can be done." Dad, years ago had a secret that can be used today to assist in our daily relationships. It worked well then and it can still work well today.
January 23, 2007
I was just thinking about relationships. They can be giving, caring or selfish and one sided. Those of us brought up with close family members and friends, learned early the importance of giving and taking in life. We learned to treat others with respect, dignity, long suffering, extending ourselves and many times putting our own wants and wishes second. Acceptance of the moment was important. Our daily agendas were changed from being inflexible to being flexible. Character was developed over time. We learned to be long suffering, patient and gentle. For many of us, as a result of living and dealing with others taught us the first steps in humility.
Since having had dementia at least two years before being diagnosed in 1997, having gone to many classes on dementia before and since that time, working with those having dementia and their families and friends on a close basis and continued by attending support groups with educational classes attached to them, I have seen and heard much that has made some changes in my life. I've heard many of my dementia buddies complain in our private support groups how they are ignored, hurt, insulted, not accepted for who they were and who they were becoming. I've seen the hurt in their eyes and the aggravation that comes as they struggle with what has happened and is happening to them. I've had concerns myself about those who hint or say that there wants and agendas come first and if any time is left over in the day, they'll give it to those of us suffering and living moment by moment with dementia.
One would think that the education and support that is available today would change old attitudes, prejudices and selfishness, but one has to allow themselves to change, to want and desire to change to the realization that this is a disease that is here to stay and that there is no cure at this time. It's going to take all the understanding and effort of a couple and or family to continue down the road on this journey. Surviving is in the moment. The realization of that fact will take loved ones and those affected a long way down the road of keeping our sanity.
Dementia individuals have the right to be treated moment by moment with thoughtfulness, respect and dignity. We have the right to be loved, touched, called by name and to be ask and observed as to what our wants and wishes are at that time.
Observation and really listening can help so much with those who care for us, and as our situations allow, it can also help us as those with dementia to make attempts to do the same for our caregivers.
January 24, 2007
In my previous journal I was discussing voting and special journals on the Alzheimer's / Caregiving Sites. Some of these journals are done by some of my friends that have dementia, of whom I've learned much and personally enjoy their journals. I'd like to invite you to check out these journals that are listed below:
Site or Rank number 1 Mary's Place
3 DASNI - People with dementia
4 Simple Pleasures by Peter Smith
37 Alice's Place
47 Jeanne in Hawaii
And last but not least 125 Morris Friedell
One cannot understand completely dementia and all it's effects without suffering with the disease but one can know about the disease. This knowledge assists those of us with dementia in understanding more about ourselves and caregiver's and friends in knowing more about us. It can be invaluable with helping us cope day after day. I highly recommend these sites and appreciate your concern. Concern leads to action. Action leads to hope
January 25, 2007
Voting is important. Not just in local and national elections but also on my daily journal site, My Journey.
The counter on my site make me feel good. The numbers are constantly showing me how many individuals were on my site. I put a lot of myself, time, effort and energy into journaling. I enjoy it. It helps me remember and to stretch my mind. I also would like to think that it may just inspire or help another individual. I'd like to think it might just make a difference in someone's life. It might help lighten the load. I receive many encouraging and supportive email notes telling me that this is so, and I appreciate each response to my journal. I do my best to respond to the note as soon as I am up to it.
Another thing I appreciate is those who take the time to vote for my sight. It doesn't take much time and really isn't complicated.
On the bottom of my Introduction Page is an area. You will find a square with a heart and a rose partially though it. At the top of the square you will see the words, "The Alzheimer's / Caregiving Site." Under this statement you will see the words, "If you feel my site deserves it, you may vote for me daily by clicking on the button above." The button is the heart. Now, if you click two times on the heart, automatically up will come a screen that is entitled, "My Topsite List." If one scrolls to the bottom of the page you will find the words, "Toplist sites by A Year to Remember", a gateway has been put up.
You the have two choices you can press on." Vote for My Journey" or you can make the choice of "Do not vote. Enter My Topsites List."
I hope you will feel that My Journey is worth your vote. Perhaps...a daily vote. I also hope that you will go back and check out the My Topsites List. You will find there many wonderful sites, some of which are friends of mine.
For your consideration.
January 26, 2007
For the last few days I've been outside watching the neighbor burn some of my limbs and branches as well as old leaves from my yard. Standing or sitting near an open fire, watching it burn and smelling it's aroma that it gives off is something that pulls me back to old times when family and friend's would have winner roasts, of course usually with marshmallows included.
There were many many times when we would go camping as a family. First I had a tent and then we were finally able to get a tag along camper. For many years, Sharon, my two daughters Mary Ann and Lynn along with myself would sit off to a near by campground for the weekend or holiday. Many happy moments were spent there, many times sitting around a camp fire at night, watching the colors of the fire and looking at the stars above us. Oh, those were the days, my friend.
Many of my memories are fading or even worse, gone, but at times, something like the brush fire of recent days has triggered old times that I would hate to lose. I pray that much of my memory will stay intact for years to come, but knowing deep within that this will probably not happen. Perhaps those around me will care for me enough to share with me the past joys and years of my life. Things I've done, places I've been, thoughts of past experiences, things I've enjoyed and that were important to me along the journey, friends and family. Perhaps these words and thoughts will trigger something deep with me, something to connect with the past that I have so enjoyed. Something to help me recall who I was.
January 27, 2007
I was thinking about elder abuse. I had worked in this area many years for the state of Ohio. It was very challenging, emotionally exhausting work. I think what made me stay in it for so many years was that I enjoyed working and helping the elderly population of my county. It's something so awful that it tends to stick in my mind still today.and on occasion, I have to talk about it.
The numbers of elder abuse reporting were very high and continue at a high rate. We often think of child abuse, spousal abuse, even animal abuse but it seems we don't think very much in our society today about elderly abuse. To think of the abuse of a helpless elderly person is almost to much to bear for many. Therefore the spot light of the local newspaper and TV news show is usually not on this nation wide, ever growing problem. Sadly the large amount of cases are under reported. Its there just the same. Like child abuse and other types of abuse, it will always be there. It's up to us to change it by being active in this area when possible.
I worked as social worker with senior citizens who were abused, which included self neglect, neglect by others and exploitation. Did you know that abuse is a crime? I was involved with many court cases involving these areas and I am proud to say, the good guys won most of the cases taken to court.
Research shows that roughly two-thirds of abuse perpetrators are family members, spouse or elder child. Caregiver's have a high amount of anxiety and easily can be part of those abusing. There are many reasons given for abuse but none of them are acceptable.
From what I understand most caregivers across America receive little or no support and yet caregiving depression and living with the care recipient are predictors of caregiving elder abuse.
I quote here from Helpguide.
The amount of stress that the caregiver experiences depends upon:
The elder's type of disease or dementia.
The progression of the elder's requirements for care: at first, care may have been mundane errands or financial management, but the needs may have progressed to helping to eat, bathe and toilet.
How the caregiver perceives the responsibility of caring for the elder. (burdensome or not)
What the elder thinks about the caregiver.
How the care recipient perceives the caregiver: if the caregiver finds the care recipient to be ungrateful, the caregiver is more likely to feel stressed.
How close the elder and caregiver were before and how close they are now.
How the caregiver copes with stress, in general (resilience)
Whether others help with the caregiving.
Violence or aggression from the elder.
For reporting elder abuse or suspecting elder abuse call 911 or your local police department. Our states also have an Elder Abuse Hotline. The national Domestic Violence Hotline is 1-800-787-3
If you think that your stress is mounting or the stress level of the one being cared for, do yourself and the one your caring for a big favor and reach out until you receive the help you need. You'll find there are others who care that are willing to listen and support you. Don't give up until you have found what you or the loved one receives what they need.
I speak only out of concern and experience as a social worker and fellow human who has seen first hand what abuse does to individuals and families.
January 28, 2007
I was thinking about the word resilience. I've heard it used many times but to refresh my memory of it's meaning, I went to my old faithful dictionary.
Resilience is the act or power of springing back to a former shape or position; capable of recoiling from pressure or shock, unchanged or undamaged.
Personally my resilience is not what it once was. The spring in me in most ways is long gone. I have to confess that many times the progressive, destructive things that come with life and dementia tend to confuse me, damage me and change me. Now I'm a fighter and don't give up or in easily, however life can wear one down.
Knowing this, I try to focus at these difficult times in my life on a system that I have put in place. The system consists of many things. My faith, caregiver wife and friends. The support I receive from my friends with dementia. Distracting myself through reading, calming music or film created for that purpose, a walk, a ride in the car, visiting a friend, sitting out side alone. Watching the birds and squirrels outside my window. Watching some program on TV that I enjoy. These are only some of the ways of coping that I have set up in the system. The secret is not in the system but using the system on a regular basis. Not just when I need it the most, but often when this are going well for us.
Then there's the 24 hour phone line that the Alzheimer's Association has put in place for caregiver and the one with dementia. It is 800-272-3900
American's are taught generally to be independent, unbending, tough, loners that can do it all by themselves. Why do we buy into this idea? I can't do it all by myself and neither can other's. We need each other to make it through this journey of life we are on. There's no reason we have to be a martyr or sing the song with the words, "I did it my way." There's another way that is much more healthy emotionally and physically but we must give up our pride and reach out for it. Not easy, but possible.
An old saying is that you either have to love it or you must be a glutton for punishment. I'm not much into pain personally. I need to have a system set in place and use it on a regular basis so that I can make this journey until the good Lord calls me home someday. This journey is far from easy but it is possible.
January 29, 2007
How does it feel to have dementia ten years after being diagnosed with dementia? I probably had the disease at least two years before that time. The feelings I have are deep, mixed and ever changing. I can feel down about my disease and then there are times it seems that I have no feeling about it at all. I guess to be honest, I feel that my life as I knew it was cut short. My life has changed dramatically as the years have gone by. It began to change slowly sometime before being diagnosed and has continued to change at a quicker speed in the last few years. I am still me. I still can do many things, but the limits put on me are ever greater as time goes by.
My thinking process is more slow and perhaps sluggish. I need more direction and can do less on my own. This and other things can cause depression to sneak up on me, rather quickly at times and I must fight it off as best that I can.
My immune system seems to be lower and I can catch illnesses easier. The illnesses can take more time for me to get over. I heal slower.
I make more mistakes than I have in the past. I can see and yet not see, hear and yet not hear so easily.
I get less accomplished and the thoughts that go through my head fly by so fast that unless written down, they are quickly gone.
Time seems to fly now at a speed that I in no way can keep up with. I notice how quick it goes by. This could be because I have Lewy Body Dementia and not Alzheimer's Disease. I notice to much at times and at other times, not enough.
My reaction time has changed from slow to a speed some where under slow. My pace is, oh so slow.
I get frustrated easier and react to what I consider wrongs more strongly than in the past. Aggravation can occur more easily.
I tire more easily. It's a tiredness or feeling of exhaustion that seems to stay with me, no matter how much rest I get.
It's more difficult to keep a routine.
Follow through is more and more difficult for me.
What was once so important to me is slowly changing to what's the most important things in life and at the moment.
I tend to think more about how much time I have left, having outlived most of my dementia buddies.
I have concerns about family that I will leave behind.
I'm more concerned about my families spiritual lives, wanting to do all within my power to make sure that the circle in Heaven will not be broken.
These are just a few of the feelings connected with thoughts that I have after having dementia for ten years plus. I'm just glad to be alive and feel thankful for every day given to me by the great Creator. Life means much to me and I plan on continuing to use what I still have daily until that day He calls me home.
January 30, 2007
In a home where there is dementia, the caregiver sets the emotional tone. Those of us with dementia have strong senses of feelings. We can sense how our caregiver feels and is handling life. Things generally are easy for me to pick up on, not that it is my choice, but how I am presently wired. Some of these feelings are listed below?
Feelings of sadness.
Feelings of happiness.
Feelings of depression.
Feelings of well-being.
Feelings of one being ill.
Feelings of one being out of control.
Feelings of anger.
Feelings of frustration.
Feelings of boredom.
Feelings of one being in a hurry.
Feelings of being shut out of one's life
Feelings of selfishness.
Feelings that no one really understands.
Feelings of not having time for us.
Feelings of confusion.
Feelings that one is dissatisfied with life.
Feelings that things are being hid from the affected individual.
Feelings of being shut out of family.
Feelings of being over overwhelmed.
Feelings of control issues.
Feelings of unresolved feelings.
There are so many emotional feelings that I sense often. I don't know how to react. At times I just stuff my feelings. At other times I become sad, quiet or depressed. There are times I feel out of control, not knowing how to handle my feelings or what to say. Sort of like walking on egg shells at times. Never knowing for sure how the caregiver will react moment by moment, day by day. There are times when feeling overwhelmed with it all, that I open my mouth and let it fly, and then feel guilty shortly there after.
When I get irritated, it is usually caused by the world around me. I can become sensitive, withdrawn, short with words and defensive. I've never become aggressive and this is not my choice way of handling my feelings, but were talking about some of us who have dementia here. It's not always Alzheimer's or a change in personality that makes us aggressive. At times I become defensive. I am defending myself against what I am picking up on emotionally or seeing in and around me.
An example is one day, I had had it. The thermostat had a wire box installed around it to keep me from touching it. Now, I get cold and hot easily so it's very important to me that the temperature in the house fit my situation. I try the layer effect to warm up or removing clothing to get cool, but this doesn't always work for me. My wife had the thermostat box installed without my permission and refused to have it removed. It seems I had set it at the wrong temperature on several occasions. After asking some time for it's removal with no results, I finally threatened to remove it with a hammer if it was not removed. Although I had made attempts to get my caregiver's cooperation and attention in controlling the thermostat to an agreeable temperature, I felt no one was listening to me. I was feeling helpless, unheard and slightly out of control although I tend to be a very peaceful person. My caregiver felt threatened and vented this feeling to others who made a big deal out of it. I was slightly irritated at the moment of the "remove it or else" situation, but was not threatening to anyone except a lifeless box around a thermostat that was making me miserable.
All that was necessary to calm me down would have been open and honest communication from both of us, but the little communication there was sort of one sided and not much of it.
Little things can become big things and very overblown quickly when daily communication is not in a relationship. Remembering to treat one another as we would want treated is also very helpful.
Those of us with dementia still have feelings and we need to feel secure, welcome, and communicated with. We need to feel that reasonable requests will be heard and acted upon.
Caregivers....Please know that many of us, I know this from being a part of several support groups for dementia patients, are emotion readers. We have needs that need to be met, not down the road when it comes up on your list of things you want to do, or is convenient, but quickly and lovingly. Not grudgingly. It's difficult to hide one's true feelings and self from us. Our memories might be slipping but many times our senses are very much alive. They've even sharpened with our disease process. Let's work together if were going to be together. Open communication and setting daily a good, healthy emotional tone for the day is so important for both affected and caregiver. This is essential for our well being.
January 31, 2007
I remember as a child and teen, it seems I rarely laughed. As an older teen, I began to laugh and smile. I discovered that it really helped me through some difficult years. and still today I value laughter and smiling. Once one really feels the value of laughing and smiling, it's difficult to give it up.
I think that knowing the priceless joy of smiles and laughter is one reason that I still read the comics in the newspaper. The comics that I really enjoy are those simple ones that really make me laugh. I also like to watch children at play. It can't help to bring out something good from deep within a person.
It has been said that a six year old child will laugh three hundred times a day while an adult will only laugh fifteen times a day. Perhaps we should take a lesson in joy and laughter from our kids instead of trying to be so serious all the time.
Laughter and smiles are not only a joy for the soul, but also a fountain of youth for all who use them according to Joseph J. Mazola. He goes on to say that it brings a fountain of youth for all who use them. They bring, health, energy, vitality, and help us to choose love easily and often. Perhaps aging really sets in when we stop laughing and smiling.
Perhaps this is one of the reasons why Jesus talks about becoming like a little child. There's a secret there that is too often overlooked by adults.
I chose to laugh and to smile as often as I can daily. I chose to enjoy life to the fullest, even with aches and pains and memory loss. I chose to become more like a little child, laughing, grinning and smiling while life speeds on for me. I also enjoy singing and whistling, and at times even humming. I not only enjoy it and help myself, but I might just affect those around me. They say it's contagious.
It's my hope that you catch it today.
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