January 1, 2006
I should have made a New Year's resolution by now, but I haven't. I've thought about it. I think I made one last year but for the life of me, I can't remember what it was.
I guess resolutions have their place and aren't a bad idea, but it seems that few follow thourgh with them.
According to an article I recently read, many resolutions made in America are very practical. To exercise more, eat less, quit a bad habit etc. I know my past resolutions were looking inward at my weaknesses and resolving to do better, but with my dementia, even if I resolved to do something, I would forget my resolution shortly there after. My follow through....well, little of it is left.
As long as there is life, choices can be made if we are competent and with the assistance of others, but as the years fly by, it's more and more difficult to change.
I'm glad that many of the changes I wanted to make, and resolved to make, occurred when I was younger. Staying in denial much of the time, dementia makes it much more difficult to change or make resolutions. My advice is too make those resolutions our whole life and on a regular basis, not just for the New Year. Don't be afraid to look within and to change if desired.
January 2, 2006
Yesterday, Sharon and I both had doctor's appointments. It seems her Fibromyalgia has been acting up and my stomach has been acting up. I keep saying I'm going to cut back on doctor's visits. I get tired of going to them, although I do have a good doctor.
My Father, bless his heart, had pretty good health most of his life and refused to go to the doctor. In fact, I can't recall him ever going to one. He lived to be 69 and seemed to enjoy his life. He kept active, long after retirement from his employment, and when he left us, he left quickly and peacefully. I have no doubt that this was his wish.
Then there are other's who seldom pass a doctor's office without going inside, and still have their aches and pains.
Some where in between these two extremes is the balance I am wanting. To make an appointment for the doctor when I need to but not to keep all the appointments that the doctor would like me to.
Balance....in all of my life, is what I work on.
January 3, 2006
I'm becoming more germ conscious these days. Winter is here along with colds and flu. I don't like either of them.
I watch and read the news a lot and have been told to wash my hands...often.
Sharon keeps germ killing soap in places where we can get to it easily, especially after being with other's. I'm sure other's don't intend to spread what ever they have...but much sickness is spread from one to another, many times by close contact.
I don't think I have a germ phobia but...I do what I can to keep the germs at bay. I don't enjoy being sick and don't feel the bragging rights that it might bring with it, makes it worth my while.
So....I'll wash my hands and pray for health.
January 4, 2006
There's not much I, as one person, can do to change the corruption that fills Washington,D.C. today. To read the newspapers and listen to the news, I am almost overwhelmed with the direction of America and how we have become a new, strange land lost without trustworthy honest leadership.
I don't listen to just one station, one commentator, or read one newspaper. I insist on knowing all sides to the issues. I am not set in stone. I am willing to change my thinking when I can see that I am wrong. I may not remember all that I read but I remember enough to be upset, very upset, and desire to change what I find as intolerable.
Many seem to refuse to be a part of the American process. I think it is sad. They throw their hands up in disgust and helplessness. I guess one has the right to bury their head in the sand our to believe that a miracle will take place without us raising a finger or protest. If only the I can't do nothing attitude would change to atleast I can do something.
I'm getting old and have dementia along with other illnesses. What can one person possible do to change what seems to be all negative and a polarized country?
First I can pray. I believe in prayer and that God changes things and situations. Second I can sign petitions that I get constantly on my computer. In fact, I just sent back a signed petition from Move On. Org asking that Congress work on the corruption issue, begin investigations and work on how the political parties are funded.
If we let the negative overtake us, then America has little chance of surviving in the future. If we become overwhelmed, fearful and withdrawal our concern and support by not voting and not talking with our elected officials, we cannot look for change. I still have faith in America. I'm still patriotic and still vote. I'm a member of a political party. I still get that warm feeling when the song, America, America is sung. I see our strengths as a nation but also our weaknesses. I see our good as well as our bad. As an American, I want to be proud of our nation and what we do and stand for. Therefore I must be a part of the solution and not part of the problem. I must act by prayer, petitions, letters and notes, phone calls and what ever else my strength and health permit.
I am only one person and am restrained in what I can do but I promise that I will still do all in my power on making a positive difference in my country and the world in which I live. I am an American with a world view.
January 5, 2006
I tend to like the comics. It's a good way to end reading all that sad and negative news in the newspaper. I find it cheers me up and gets my one track mind off of what I just read.
One of the comics I enjoy is Beetle Bailey. In this carton, a Commander is asking Sarge what is wrong with Lt. Fuzz? Lt. Fuzz has his head down on his desk and looks like he is in distress. Sage says laughing, "he gargled with aftershave,sprayed deodorant on his hair, put hair oil on his face, and swallowed his toothpaste."
This might sound like one of your days. I know it sounds like many of mine. Nothing goes right and everything seems to go wrong.
I was recalling a day long ago when I was still a social worker. It was Monday and I was having a terrible day. After a while, I wondered why I just didn't go home and back to bed.
It was lunch time when I walked out of my work place onto the square to eat my lunch. Then it happened. A pigeon flying over my head decided to use it as a target. I discovered this not so pleasant material planted right on my very top. Oh, what a day. I should have gone home and covered my head earlier in the day. Some times first impressions are the ones to go with.
January 6, 2006
I noticed that many times I am not sure how to answer a question. Questions usually come all of a sudden, sort of out of no where and I don't have time to think about the answer. Questions usually require answers when ask.
I'm learning how to use words that don't give exact answers when necessary. One would think I was a politician. I can use the words I think....,probally, I guess, maybe, it seems like..., it was about...,I think...,possible and the list goes on.
Questions can put me on the spot, I don't mind questions but it's how to answer them that is troubling at times.
Many times the answer comes to me later and then again...many times the answer never comes. There are times I ask myself why I didn't say that? I wish I would have made more of an attempt to answer but usually that would not help me out. At times I am embarrassed by how I handled the question.
Questions can be difficult at times for us. I prefer just chit chat with few if any questions involved.
January 7, 2006
Journaling is so important to me and can be so much fun but there are some frustrations that come along with it. I wanted to explore some of these. I'm sure they lead to other frustrations, especially for my faithful webmaster, Tay Austin.
The first thing that comes to my mind is that I constantly have to check and see what date it is, including the month and year. After that I must put "Chip's Journal" and them put the date again. If I get all three completed, it's nothing less than a miracle. Lots of laughs.
After that comes the content of my journal entry. There are times that I sit here at my computer and nothing comes. Nothing at all. Then there are times that thoughts come that make little sense to me, let alone a reader.
At other times, I sit down to journal and the thoughts just begin flowing. They come from my mind and heart out my fingers, onto the keys and from there...onto the blank paper in front of me. Of course it runs through my sense of humor that I think I was born with. Can't help it. It's there...and I have to admit I like it. Laughter is important to me.
I try to be factual along with using my imagination to be creative. This is good for my brain, because I try to reach back into time, journaling about past, present and future. This process brings things to mind that would rarely come to me without it. Journaling pulls at my mind, tugs at my heart, forces me to think about my life, and what's really important to me. And of course, many times it brings a smile or laugh from me.
I never know what I'll end up with when I begin journaling. When I look back at what I wrote some time later, Many times I am surprised.Then there are the times when I say,"did I write that?"
January 8, 2006
When things cross my mind, I have to catch them because they are fleeting and many time don't return to me.
I wish they had something called a thought catcher, sort of like a dream cather,but they don't so I'm on my own.
I have a choice when thoughts come. I have to act on them at that moment or they are gone. I can act upon them, speak them out or I can write them down and I have to make the choice quickly before the thought it gone.
Now, usually when I do something quickly, it's not as good as if I had some time to think about it. I can make mistakes easily during this split moment and many times by the time I act upon my thoughts, there gone. Where they go, I'll never know. Not to worry, other thoughts will gradually take it's place. Lots of laughs.
January 9, 2006
Some time back after staining many of my sweaters and shirts, it was decided that perhaps I should wear a bib when I ate at home. I thought about it for some time before approving the idea. I recalled that my deceased Father In Law, Lawrence Willey had worn one and didn't seem to mind. In fact, it seemed to help the situation.
Sharon found me a couple manly bibs. One has sail boats on it. I forget what the other one looks like. If I can feel manly when I wear my bib, I don't mind so much. I think the hesitancy thing is just pride anyway.
It seems that I'm not very careful when I'm eating. I think I am but really I'm not. This makes for Sharon, many more clothes to wash and stains that refuse to come out.
By doing this one small act of wearing a large manly bib, I save her some additional work.
I haven't gotten to the place where I'll wear my bib at a restaurant yet or in front of those not in the family. I have a ways to go on agreeing to do that and probably never will get around to it.
Caregivers must remember that as males, even though we have dementia, we still have our manly pride. For me personally, a little pride doesn't hurt us. It's part of being human. Still...this must be kept in mind in our care.
January 10, 2006
I keep reading about the importance of drinking lots of liquid for the sake of our health. As someone who is prone to urinary tract infection, this is very important. For those of us with dementia, we are prone to the infection and it can make us pretty sick, involving a doctor's visit and medication to clear it up.
Now, I don't know what there is about water, but neither Sharon nor I drink as much as we should. Realizing this I try to replace the lack of water by drinking juice of various types. As I type this journal, a glass up V8 juice sits by me. I keep sipping on it until it is gone and then hopefully replace it with a glass of something else.
Recently I was telling Sharon she should drink more water. Some where during our conversation, it hit me that I was sure one to talk.It's sort of like the "do as I say, not as I do" thought.
If I ask someone else to do something, I should practice the suggestion myself, or atleast be willing to do so.
So....I think I'll take another drink of my juice and continue to keep my glass filled up when I think of it. That way, I can still urge Sharon to drink more liquid.
January 11, 2006
As a life long student, that is until I became pretty ill, I would take classes that would result in credits for my social worker license. In addition, I would take classes on areas of interest and self improvement. It seems like I was always taking a class or so, and loving every moment of it, except perhaps for test time. It seems I've been in the class room setting for much of my life.
In the class room, there were lessons to learn. The lessons would help me apply what I learned to my career, enjoyment or personal growth.
I was thinking, which is quite an accomplishment for me at this time in my life, about lessons my disease and being ill has taught me. There are those who can't see beyond their diagnoses or pain. I've had both, but I'm pushing myself beyond those things to what lessons I have learned and continue to learn.
I've learned that there is life after diagnoses. If we choose, life will continue to happen. Life will go on inspite of what has happened and what we've going though. We can lay down with self pity, or we can keep on fighting. We can choose life. That's what I choose. There are moments when I stop for a moment, a day or two. Usually this is when I'm depressed, which were prone to, but I pick myself up, shake myself off, and keep on going. This is for my benefit as well as those I love.
Another thing I've learned is that most individuals have some sickness of disease that they are coping with. I'm learning to connect with these individuals, supporting them and learning lessons from them. I am making new friends.
I am learning to be more tolerant and understanding. I am learning to reach out beyond myself to those with disease and accepting the care and love they return to me.
I am learning to look beyond myself and my own problems to a new dimension of life. A dimension of spirituality and of service. It's not just me...it's the world.
I guess when I think about it, I've learned lessons my whole life, not just from the classroom, but from others, from the creation around about me, from books and the news. Learning is a continual process. Just because we forget is no reason to not be learning. We may forget many lessons in time, but as we reach out, our brain continues to develop in new systems and life...life goes on.
January 12, 2006
I have a good friend named Tommy Byrum and his wife Trudy. I met Tommy when we first moved to Florida. We became good friends and our friendship just keeps growing.
I admire Tommy greatly. We share many of the same things such as religious values, political parties and we both seem to share the feeling that we want to be a part of the solution to our messed up world, and not part of the problem.
Usually Tommy calls weekly to check on me and on occasion, arrangements are made for us to attend men's meeting at church or to volunteer together. At times, Tommy invites me just to go along with him on errands or for a ride down some country roads. I never know where were going to end up for sure. Many times these rides end up with getting some refreshments and sitting along the great St. James River in our area, observing nature at it's best, and discussing who knows what? I look forward to these times out and the discussions make it a very special time for me. I've learned so much from Tommy and in many ways, he's become somewhat of a mentor for me.
We share what's happening in our world and in the broader world. We discuss family, friends, religion and politics. Many times the latest news comes up.
Tommy has even taught...or perhaps I should say, is patiently teaching me how to fish. He lives near us on a canal and not far from the river.
Sharon and I enjoy an occasional visit with Tommy and Trudy, which usually ends up with some food involved with it. Trudy is an excellent cook, and Tommy...well, he's not too bad himself.
Friends are treasures, and we have so many of them. New friends and old friends. We value each and every one of them. They are an important ingredient, a gift from the good Lord above, that helps to make life so enjoyable.
January 13, 2006
Recycling is something small that I can do to help with redistribution of all the throw away items we get almost daily in our home.
Some items than can be recycled include plastic bags, plastic and glass bottles, pop cans and newspapers. The two that we have decided to recycle is pop cans and newspapers. They are the easiest for us to collect and then redistribute.
With so many throw away items and waste, our landfills in the nation are being filled to overflow with little area to replace them. In some areas of the country, recycling is mandatory. Here in our area, it is not, but we fill by doing what we do, it is helping. I think in the future, recycling just might be mandatory nationwide. Were just getting an early start on what can be a step in a solution to the problem we have. It gives me a good feeling in knowing I am doing something on a problem that exists.
January 14, 2006
Have you ever had heart burn? I just had a bout with it while resting on the cough. It's not very pleasant. I would even go so far as to call it painful.
Heart burn can startle you and make you want some quick relief. It's a burning sensation in the esophagus due to acidity if the stomach. It's deeply felt, causing distress.
I've had it before and my doctor is aware. In fact, he asks me occasionally if I have experienced any of it. In the past I have had more frequent bouts with heart burn but it's been some time now...that is until today. It took me by surprise.
After the shock of the intense pain lessened slightly, I took some liquid antacid and some pain reliever. Heartburn brings one to a sudden stop, or at least me, and I laid there on the cough for some time until the pain has subsided.
I have no idea what I eat to bring heartburn on. I try to stay away from spicy foods or goods that produce gas and yet...it still happens.
I really don't want to take any more medication than I have to take now. I let Sharon know when the attacks occur so that she can be aware and also later report them to the doctor. I guess that's about all I can do for now. I hope they don't worsen. I have enough on my plate without additional complications.
January 15, 2006
Well, I finally got a big boy's bed. I'm so happy. For some time I've been sleeping in a small single bed. Now, I'm a big guy. My days of being thin is behind me. In fact, I began leaving them behind when I married Sharon who is a wonderful cook, so I'll blame her. Lots of laughs. Having a more sedentary life style due to my disease, I seem to gain pounds and keep them. Shedding the baggage has become more difficult for me. Besides all that I'm long. Six foot one inch.
Now, when I lay on a small bed I constantly feel like I'm going to fall out. With my dreams and all, I toss and turn, trying to get comfortable and in addition, I tend to dream, at times, nightmares.
More than once I've woke up after falling onto the floor. It somehow has the affect of rudely and suddenly awakening a person. Not nice...So, I requested a big boy's bed. A full size bed that fits me better.
I now sleep a little more comfortable and can toss all I want to and so far, knock on wood, I haven't fallen out of my bed. I have a little more secure feeling when I go to bed now that I'm not going to wake up on the floor or half way out of bed. It's a nice feeling. A feeling of security. I like to feel secure.
January 16, 2006
Martin Luther King Day is a time for the nation to remember the injustices that Mr. King fought. A time to remember his fight for our freedom, equality, and dignity of all races and people. A time to remember the message of change through nonviolence.
Let's remember together and allow it to stir our hearts afresh and call us to action.
An old song I like is called Ebony and Ivory by Sir Paul McCartney and Stevie Wonder. Here are the words:
Ebony and Ivory
Live together in perfect harmony
Side by side on my piano keyboard
Oh Lord, why don't we?
We all know that people are the same wherever you go
There's good and bad in everyone
We learn to live, we learn to give each other
What we need to survive
Ebony and Ivory
Live together in perfect harmony
Oh Lord, why don't we?
Live together in prefect harmony
We all know that people are the same
wherever we go
There's good and bad in everyone
We learn to live, we learn to give each other
What we need to survive
Ebony and Ivory
Live together in perfect harmony
Side by side on my piano keyboard
Oh Lord, why don't we?
Side by side on my piano keyboard
Oh Lord, why don't we?
Ebony, Ivory, living in perfect harmony
Ebony, Ivory, living in perfect harmony
Ebony, Ivory, living in perfect harmony
Something to think about on this American holiday. I know I am.
January 17, 2006
Another friend just passed into that place prepared just for us.That place of rest, of beauty and peace. That place where our aches and pains are gone. That place where no one ever suffers with dementia. Heaven is it's name.
Alzheimer's Friends that have won the battle and are greatly missed:
January 18, 2006
Martin Luther King, Jr., said that If one wanted to say he was a drum major, say that he was a drum major for justice. Say that he was a drum major for peace. Say that he was a drum major for righteousness. He went onto say that all of the shallow things will not matter.
Dr. King went on to say that he didn't have any money to leave behind. That he wouldn't have the fine and luxurious things in life to leave behind but that he just wanted to leave a committed life behind.
"If I can help somebody as I pass along, if I can cheer somebody with a word or song. If I can show somebody he is traveling wrong, then my living will not be in vain."
When my final day is past here on earth, I just want it to be said that he brought laughter and life with him where ever he went. That I carried with me a song that Jesus gave me. I want to make a difference in my world and the lives of those that I pass by. The best way I can do that is to allow Jesus to live within me and allow the love that He gives me to overflow to those round about me. My cup overflows with his joy and love and I want other's to be filled with that overflow.
January 19, 2006
Sharon and I was coming back from a doctor's visit. Riding on a country road when all of a sudden, I noticed something moving on the road in front of us. Sharon slowed down to a stop and I, discovering it was a turtle, jumped out of the car to see that it got to the other side of the road safely. I picked it up and held it briefly.Turtles are so beautiful and must be held careful, as not to allow it to bite you.
I carried the turtle to the other side of the road and left it go, free to roam the earth once again, as they have since time began.
How many of us stop for the turtles of life that are in our path? I must admit many times I have passed by on the other side and kept going. Missing the chance for a new adventure, for some beauty, to help another along the way, be it animal or human being.
I''m learning some lessons in life and perhaps that's a big part of life. Lessons learned. I'm stopping, bending down to touch as Christ touched, exploring, feeling, smelling, pausing, taking the time, thinking beyond the moment while living in the moment. I'm finding as I age and my stages keep changing that life is still enjoyable and it's for those who risk to slow down enough to enjoy the moment.
January 20, 2006
I've made a decision. For some time now, I've been receiving assistance from my family doctor as well as exploring my dementia at Mayo Clinic.
My family doctor is a very gifted and caring man who I feel quite comfortable with. When I am ill, it is he who diagnoses my illness and gives me medication to make me well again or, to maintain my life.
Some time back I made the decision to be tested at Mayo Clinic, since it is not that far from us. There are specialists there in most areas and there facilities and equipment is very impressive.
I was introduced to a great neologist who was the head of the department. My visits with him were well worth the effort and new strides were made helping me understand my dementia.
My neurologist there after considerable time, has changed my earlier diagnoses from that of the early stages of Alzheimer's Disease to probable Lewy Body Dementia. I could continue my trips to Mayo for further testing and consultation, but the trips are long and the appointments are very draining for me. I've decided that enough is enough and although I could continue testing the rest of my life, I don't really want to. It's a decision I have made after considerable thought and talking with Sharon while weighing the pros and cons of the matter.
Although one can never have too much knowledge about disease, one can decide that they are satisfied with a diagnoses, followed by learning to accept and live with it.
I continue to thirst for knowledge, yes, even with dementia. I do continued research on computer and reading. There is a vast store of information and knowledge in both places and I never tire of surfing the net and reading chapters in a book of interest.
Although the thirst is still there, it is diminished at times by tiredness, pain, discomfort and at times, the lack of understanding and remembering. Both are a problem for me but still I insist on pushing on. The push is not what it once was, but there is still some left. I plan to use it wisely.
January 21, 2006
Those of us with dementia can keep our caregiver's busy...day and night. We are a hand full...some may say a plate full. I hope whatever is said about us....is said with care and love. Lots of laughs.
I've thought about it and try to do all that I can do to lessen the stress of caregiving...but yet I realize there is bound to be stress for both of us. I realize also that as my dementia continues, there will be more stress. Some things that cause stress, I have control of but so much of it, I do not or will not.
I've thought about it and can see where they're many ways to simply things and to make them easier for us. There are also ways to make it more difficult and stressful. The long good bye allows for planning where some diseases do not.
Now, planning requires two parties when possible and when two individuals live together. The caregiver and the affected individual. It involves input from both parties and perhaps for the best, from outside parties as well.
Likes and dislikes must be considered, personalties, age, symptoms, stages, gender, strengths and weaknesses. This goes for both parties involved. The fact that we as affected are ever changing, having good moments and bad must be considered. It's been my experience that usually, we don't intentionally cause stress. In fact, personally, I don't like stress.
If a couple have been in a relationship or marriage for long, they have to do much the same as in dementia relationships, for survival. I think that an indication of how difficult this can be is that only half of marriages survive.
In dementia relationships we hopefully are still in love with each other and care for each other. We want to survive. Both of us. Intact, that is. I have read and heard of many couples that have survived intact and I have heard of a few that have ended in divorce. Then...sad to say, I hear of many relationships that are filled with stress. If we could remember what drew us to each other and what kept us together for the first few years. If we could remember the vows we made. If we could remember the Golden Rule, then no matter how difficult it gets, no matter how the waves beat upon us, we will survive and be better for it.
Life is possible after diagnoses. It takes give and take and lots of planning, however. It just doesn't happen by accident. I for one, want my mate to still enjoy life, long after my departure.
These are just some musings from someone who not only thinks about survival but also plans on surviving.
January 22, 2006
Sharon just brought a smile to me. Something jumped in my heart. My thoughts were suddenly gathered as I concentrated on several pieces of Swiss Cheese on a plate that I noticed near me. Oh my...I couldn't wait. It didn't take me long to make them disappear and oh, how good they tasted.
It's been two weeks now. My doctor took me off of all milk products. The greatest affect for me personally was that I could not eat cheese. I thought I might die. I love cheese, especially Swiss Cheese. I don't know that I've ever tasted a cheese that I didn't like, and I've tasted lots of cheese in my time.
Being of Swiss and German ancestry, cheese was one of the staples of our existence. It was always in the home, on the table, in the refrigerator. At an early age, I gained a strong desire and taste for cheese.
Growing up near Amish Country in Ohio with many cheese houses close by, we could enjoy freshly made cheese of all flavors and types. From Moon Cheese to Chocolate. From Pickle Cheese to Pizza Cheese. You name it, it was probably a choice of cheese available.
In some of the cheese houses we could watch it be made, see it cut and packaged. The history of cheese making was also featured. In one particular cheese house, one could walk by the packaged cheese and taste them. What a treat. I soon discovered that I enjoyed smoked cheese.
Well, two weeks off of cheese after all these years almost make me sweat and have a seizure but I somehow survived. The doctor was testing me to see if milk products were affecting my stomach. I don't know that I'd tell him if it did. Lots of laughs.
Cheese, by itself or with some other food item is delicious. Most things go better with cheese, I've found. May there be cheese on Earth and in Heaven and let the smiles roll.
January 23, 2006
I've been listening to two new CD's I purchased recently. It's Folk music. Now, I enjoy folk music and was pleasantly surprised when my eyes spotted "Let's Folk again" featuring 40 original folks songs. Those of you who are baby boomers or close to it like me, may have enjoyed folk music back in the good OLE 60's. Original songs of peace, of love, of basic life.
There was The Brother's Four, Peter, Paul and Mary, Joan Boez, Judy Collins, Simon and Garfunkkel, John Denver, The Eberly Brothers and oh so many more.
The music is not as popular today but I still have a soft spot in my heart for it and wish it would return to the center stage of popularity. Perhaps it could change some things in our world if it was taken seriously.
One of the songs is called He Ain't Heavy, He's My Brother by The Hollies and the words go like this:
The road is long
With many a winding turn
That leads us to who knows where
But I'm strong
Strong enough to carry him
He ain't heavy, he's my brother
So on we go
His welfare is of my concern
No burden is he to bear
We'll get there
For I know
He would not encumber me,
He ain't heavy, he's my brother
If I'm laden at all
I'm laden with sadness
That everyone's heart
Isn't filled with the gladness
Of love for one another
It's a long, long road
From which there is no return
While we're on the way to there
Why not share
And the load
Doesn't weigh me down at all
He ain't heavy, he's my brother.
January 24, 2006
I finally ordered and received three new books written by those with dementia. Slowly I am reading them but in time...I will get to the end. There's something special about not rushing through a book. Savoring each page, each thought. I have no choice due to my dementia.
When I am finished I will pass the books on to others that care. I will also have read every book that I am aware of, that was written by a person with dementia. I've long wanted to do this very thing and finally it's within reach for me.
Do I remember all that I read? Of course not. I know when I begin a book that I will not recall all of the content, but enough...enough to make it worth my while.
The books are: When It Gets Dark..An Enlightened Reflection on Life with Alzheimer's by Thomas DeBaggio, Who Will I Be When I Die? by Christine Boden and Christine's second book, Dancing with Dementia. My Story of Living Positively With Dementia by the same author but under her married name, Christine Bryden
I've begun all three books and highly recommend them. It's great when someone allows you to go into their world...to travel some miles with them.
For those of us with dementia, caregiver's and those who want to understand or at least try to understand, books written by someone with the disease can be a beginning place.
There are not that many books written by those with demenita. You will seldom find a list but I invite you to go to my daily journal, My Journey, and included with it is a list of books written by those with dementia.
These stories are inspiring and bring hope. What goes through our minds? What do we think? What causes our erratic behavior? Why do we do what we do? What lies ahead of us? What are our hopes and dreams? Oh, the questions are many, but not voiced often enough.
Read a first hand account of someone suffering with dementia. Allow it to challenge you, to change you, to inspire you, to bring about action.
January 25, 2006
I was trying to explain to my Grand Daughter Ashley, age 19, what love is. It made me think. What is love? I know it's a feeling, an attraction to another, something that gives us a reason to live, to share, to give.
Many times when I have a question, I turn to my Bible. I use the Message by Eugene Peterson. It's the Bible in contemporary language. The language I speak and understand. Personally I make an attempt to use it daily. It enriches my life and is a love letter from my Creator.
This passage found in I Corinthians 12 says that I'm bankrupt without love.
It goes on to say:
Love never gives up.
Love cares more for others than for self.
Love doesn't want what it doesn't have.
Love doesn't strut,
Doesn't have a swelled head,
Doesn't force itself on others,
Isn't always "me first."
Doesn't fly off the handle,
Doesn't keep score of the sins of others,
Doesn't revel when others grovel,
Takes pleasure in the flowering of truth,
Puts up with anything,
Always looks for the best,
Never looks back,
But keeps going to the end.
And then it says, "Love never dies." I like that.
There's so much more there, but it's in the Book. Read it for yourself. I have so much to learn and experience. My journey has just begun.
January 26, 2006
Well, this is at least the fifth time my journal entry has disappeared now today. Where it goes, I have no idea but it just disappears. I've checked the few spots I know to check where it could possible be waiting for me. Not there.
I'm using Sharon's computer. My computer is messed up right now. Has been for many days. So I decided to try and write a journal entry on Sharon's computer. The key board is slightly different from mine. Slightly different and I don't always click, if you know what I mean. I'm fortunate to get it right when it is routine for me.
So far I've gotten frustrated, stressed, irritated and slightly angry, one might say. On this new keyboard one has to hit the keys just so with no room for variance. The keys seem closer to each other than on the key board that I am use to. I have to put my fingers in more of an upright position, not to hit keys that I don't intend to hit.
Normally I could call Sharon for help but she is sleeping. This is not an emergency, at lest yet, and I refuse to wake her up from her nap. She was extra tired today, and unless it's an emergency, I don't wake her up. I think I've been told that by Sharon. I'm not sure, but it seems like it. One knows when they've heard such messages from another in a certain tone of voice before. Now, Sharon's tone of voice is usually nice and sweet, so when it comes through in another tone, I sit up and pay attention. Lots of laughs. When there's a change in tone, it get's my attention, enough so that sometimes later, I remember the tone and the message.
Well, so far, so good. I think before my journal entry disappears again, I should correct the spelling and then quickly send it to my webmaster Tay Austin, who will then put it on My Journey for you to read. Bless her heart. So, here it goes to Tay.I'm hoping for the best.
January 27, 2006
I have a caregiver personality. I think I inherited it from both my Mom and my Dad. I'm grateful. It's sort of the Mr. Fix it type. For years now, I've gone around attempting to fix problems. since ... well, it's been so long I can't recall since when. Possible birth. Lots of laughs.
I like my personality. I've accepted it and enjoyed using it whenever possible. As friend, mate, father, neighbor, one passing by, and in my former profession as minister and social worker, I used my personality, my abilities and later, my training, to help others as well as myself.
Some years ago, Mr. Fix it got broke. It was called dementia. Much like Humpty Dumpty, they were never able to put me together again like I once was. My personality and want to change things attitude is still there but what happens, is usually less than desirable. The outcome of my actions is not the same as it once was. Try as I might, I just can't do things the same...not as well or thought out.
I have had to come to terms with this, but acceptance is an everyday thing. So many times I find my self volunteering for things that I can no longer do. The urge is still there many times but the follow through is the problem. Much of the time my good intentions are just not gonna happen.
I am a man of my word. In the past when I've committed myself, volunteered, or wanted to be Mr. Fix it, I did it. I followed through. Now, I must remember that my involvement also involves Sharon or others. Something that I don't always think about before volunteering myself.
Many times Sharon must provide transportation, spend her time staying with me till I'm done, interrupt her life, do things that will assist me in making my commitments happen. Now, Sharon has her own life and although I am a big part of it, she needs to to consulted before I commit "us" to doing something.
My expectations of what I can do must be more realistic and that's not always the page I'm on. I have times when my energy is so low that I can't even think of being involved with fixing or attempting to bring change about, but that old urge of mine, to be a caregiver and a fixer is never far from the surface and I must try harder to keep it in check. At those times I must bite my tongue or sit on my hands that would other wise be up in the air, committing myself to give care or fix something.My good intentions are not enough.
Reality checks on my part must be more of my routine daily.
January 28, 2006
"If I can't say something nice about someone, don't say it at all." Something that I heard and stuck with me along my path. I think the saying has helped color my life.
Men as a whole don't gossip much. We talk about things, ideas, sports, religion, our sweet heart, kids, friends and neighbors but even then...we don't talk much. Details are lacking. We don't describe as much as just simple talk to each other. Now, I'm not going to get into the gender thing about the difference between the way men and women talk to each other and other's but I will say for years I worked in the office with both genders and I would be embarrassed many times by how much talk about other's business went on. At times it was difficult to stay out of the conversations but I found that when I wanted to, I usually could do it.
Growing up, my family did not talk about others and were very quiet about our family business. Information on others was sort of given on a need to know basis. I always felt secure in knowing that secrets and conversations shared would stay right with those I was sharing it with. I still like that idea.
I know that when I share with God, my secrets and thoughts are going to be kept confident unless He decides someone else needs to know. I trust Him to make those decision and go to Him with confidence.
In my own life I've had difficulty learning to trust others because what I have said was not kept in confidence. Once one is betrayed, it is very hard to build confidence again.
I want to be a person...a friend, who shares only thoughts, ideas, dreams, good things, and a person that can be trusted with things told to me in confidence. I know the difference. Other's know the difference also.
Dementia can make judgment poor. Still, I know right from wrong, and I can carry on a conversation with the best, at least when I'm feeling good, without gossiping. May I always think before speaking and speak only that which will show other's best side and not their worst. There are so many things that I can and want to talk about that I don't even think about going negative.
January 29, 2006
Over my journey, I have come to appreciate the Alzheimer's Association, both
nationally and locally. I was diagnosed at age 50 in 1997 with the early stages of Alzheimer's Disease. I went through disbelief, shock, the questioning, "Why me" and denial. During this difficult time of my life, I reached out to the local Alzheimer's Association and they listened to my story. They not only listened, but they cared and went into action by beginning an early stage support group for both my wife and me, as well as those in the community. Having moved from Ohio to Florida, we were pleased to find another support group so that we could continue what was begun in another early stage group, the process of healing and growth. I'll always be grateful.
As a licensed social worker, I knew how important it was for me to connect my clients to support groups. This occurred on many occasions and I, as well as others, have found them to be very helpful, bringing hope to many. Having studied Alzheimer's Disease in college and having worked with many families with the disease, I knew about some of the struggles these individuals had and how so often they suffered on their own, many times being isolated from help. I found that encouragement, education and support assisted them with their difficult journey.
On a more personal level, I have Alzheimer's Disease in my family. Both my mother and grandmother were diagnosed with the disease. I was the third in my family to be diagnosed with it, but sadly, I would not be the last one to be diagnosed. My brother has been diagnosed as well.
I have discovered that Alzheimer's affects individuals at all ages, both young and old. Individuals of all races, religions, political persuasions, and economical groups are affected by this disease. The Alzheimer's Association has been able to affectively reach out to all of these groups, working with the affected individual, caregiver, family, and support team. By doing so it is making the world a much better place.
My wife, Sharon, and I have gained much support though our local group sponsored by the Alzheimer's Association. We have been encouraged and have gained much insight into my disease with it's many issues. We have been able to find comfort as well as encourage others in our growing group that also has Alzheimer's Disease. Many new friends have been made. We support each other in this new family that has been drawn together due to our disease. We have found strength to continue our journey and that there is life after being diagnosed. We have discovered the courage to go on and to share with our world that there is hope.
Socialization is a part of our support group. Just too know that we're not alone. We look forward to our times together, if we're learning, sharing, encouraging others or at play. The laughter that comes with our support is like medicine and the tears bring comfort from the larger group. The leadership of our support group from the Association is so appreciated. We couldn't ask for more caring, supportive and educated leadership. Saying thank you does not seem adequate to express our feelings about the Alzheimer's Association.
January 30, 2006
I was thinking about brain drain. It seems that each thing I do takes more brain power. Getting up in the morning, getting dressed properly, hygiene, medication, chores, speech, attitude, preparing meals, breakfast and lunch, knowing when to rest,judgement,routines,excercising, reading, devotions, journaling and surfing the net, games, adjusting TV and other equipment for enjoyment including talking on the phone, to my Sharon and to others. At one time, these things were almost automatic, not taking much thought, but now...these days, everything I do takes lots of thought. This thought process is tiring. It becomes more and more difficult. Some things are done less often due to forgetfulness, lack of energy or desire. One seems to feed off of the other, in no order.
Life, although still interesting to me and worth the living, is more and more difficult. More follow through with me, more tolerence,more flexibility and understanding is necessary to assist me through my days. This puts an extra burden on my caregiver.
If you would sit with me for a short time, you would not be able to see what struggles I live with. With dementia, many times it seems that much of the disease, at least in the earlier stages which differ with each of us, is hidden to many that are even close to us.
Now, the caregiver who lives and breaths dementia is more attune to our struggles. At times, I voice my concerns or complaints, what ever might come out, but at other times, as a couple of many years, we just know each other. We can sense and feel what is taking place or not with each other.
Oh, the energy that it takes to think and do. I pray more and more, " Lord, give me this day my daily strength," that will take me to bed time.
January 31, 2006
More and more often, I've been second guessing myself. Some times, it more than just second guessing, it goes on to third and beyond.
This is a change I've been noticing in me. Did I lock the door? Did I take my medication? Did I feed the cat? On the list goes.
This is different from just forgetting which I'm accustomed too by now. Now, there are many things that we do in life that are almost automatic, like breathing...doing something without thinking about it.
I don't know that much happens in my life any more without thinking first, except maybe breathing. Lots of laughs.
On top of thinking about things, then I must act on them, and following through ...hopefully. And then on top of that, I second guess myself. I don't need this. Didn't ask for it....and don't want it. I've got enough on my plate. But...it's raised it's ugly head and seems to be part of where I'm at.
Acceptance is not there yet, but neither am I in denial. I'm some where in between. I see it for what it is. There nothing I can do to change it or prevent it. It could lead to a helpless feelings but I'm fighting it.
As these changes keep coming into my life, unwelcome as they are...I have to work with them. I can't let them get to me, cause anger, resentment or make me give up. More are coming. I have no doubt. As my dear Mom would say, "I don't like what I see." She couldn't change what was happening to her either. But....she left me an example...a good example of how to face the changes with grace. She did it and I can too.
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