ALZHEIMER’S DISEASE
One Man’s Experience
With
Early Onset
A Life of Confusion
Lived positively!
Printed…October 20, 2005
Copyright © 2006 by David L. Fost
Email: bgeadf@hotmail.com (Added quotes (May 12, 2007)
Eleven years ago my mother-in-law passed away with Alzheimer’s disease. Four years ago my mother also passed away with the same disease. No it is not contagious, but there can be hereditary factors.
However, we know that just because heredity can be a factor, not all of us are going to get that debilitating disease. And that is good to know. Well at least for you to know. Three years ago, I was diagnosed, ten years younger than normal. It should have been in my later 60’s rather than late 50’s. OUCH!
Ah, so now you are thinking, here is a guy who wishes to tell his life’s story… WRONG! My life story is even too long even for me (even if there are only 50+ years). Here is what I really want to do.
FIRST is to get you to read this booklet. It is not laid out as one would expect. It should be a quick read with a different style. It is done more to have it talk to you. You don’t need to talk back. (People might wonder if maybe you’re not normal!) Then again, maybe they already know. So you read it any way you wish.
SECOND, is for you to look carefully and see if there are any areas which relate to you. You may very well read it for yourself, for someone in your family, for a friend, and finally…
THIRD, if you see anything to which you can relate, you will take some action. If not, pass it on.
This was not originated or suggested by the Alzheimer Society, nor by a friend of mine. It became my passion. I am in the early stages and have been in a support group of people who were further down the road with the disease. I have been asked to be a co-facilitator at a group. It is giving me some ideas as to what to expect.
In reality, none of us respond exactly the same and I repeat this throughout the booklet, so understand that my experiences maybe different than others. What IS interesting is what we have in common.
(i)
There are suggestions that might alert the reader about potential symptoms of the disease for you, a family member, or a friend. Remember, we are talking about EARLY ONSET.
If I can make you aware of some of the things that need to be done, then I will have made a contribution to at least one person. The awareness of the disease has totally refocused my thinking as to what is important and not important in life. For that reason it is a blessing getting the disease ten years earlier than the norm.
If we had known the future when we were twenty years old, what would we have done differently? I now get some sense as to what I really need to do, versus what I might have done over the next ten years.
I plan to use it to the fullest. I thought I was already doing it. And to a large degree I was. But now I am fortunate to have been given time and vision to hone it.
You may be twenty years of age, and unlikely to have any form of dementia. In spite of that, some of these principles of life will aid you in getting you to your goals. You have many opportunities in your ‘choices in life’.
If you, of any age, are dealing with this disease of alzheimers in your family, you are not alone. This booklet is for you.
Let us go down a road together which is still full of opportunities
Dave Fost
Now, turn the page…
(ii)
It is not fun having Alzheimer disease. And any fun we have in the early stages will eventually ‘decrease’ with the ‘increase’ of our disease. We hate calling it ‘our disease’ as we did not put in an order to receive it. However, it has become part of us by default. No one is to blame. Drop any ‘if only I had done…’
OUCH!
So we are stuck with it. We have two options and that is to deny it or accept it, with the hope of a possible arrest with some of the new drugs that are in the study stages.
What are the options of the ‘accept or deny’ positions. Well for me, it gives an opportunity to focus on more of the positives as to what I can do in the coming years. For those who are in the denial stage, my recommendation would be to…
1. STOP and ponder a moment
2. Talk to your caregiver and the medical doctor who made the diagnosis. DO NOT ask friends. These two people have your interest at heart, and are the ones who will want to face reality (although sometimes it can be just as difficult for the caregiver to accept). Why the doctor? He/she is the person with the most knowledge. Neither will be perfect, but both will be on your side. In my case #1 is my wife.
1
3. Your friends. Once they are aware of the interest of the caregiver and the medical consultant, they might begin to understand why they had noticed something different about you, but neglected to voice it.
4. Yourself: You would think that you should be the first person to recognize the changes. In reality, most of us are not the first to notice. Why not? We don’t want to be different. And guess what, we are not different!
Most people in the world have some barrier to confront. My younger daughter has a global Learning Disability, in addition to Epilepsy, while my older daughter was diagnosed with Juvenile Diabetes at 10 years old. I am Dyslexic and have Alzheimer Disease. Just imagine, a Dyslexic with Alzheimers. That has to be a gift. I can reverse everything and forget it! Before, I would reverse everything and remember it. Talk about feeling dumb! Well not really, but you get my point.
What opportunities we have before us! At least in the earlier stages, we can be a comfort to other people. Our caregivers? Our friends? Our children and grandchildren? The issue is not whether we have the disease, or any other disease. The issue is how we approach it, in the early stages. We have two options:
1. To make it a Stumbling Block or,
2. A Stepping Stone.
2
You are in the early stages. You are likely to be aware of everything that is around you. I am…so far. I cannot be cocky, as in two years, or four years I will not be in this state of mind. Of course, as to my mind, it has never been in a great state. It is just that today it is in a lesser state.
As I am typing this I am frustrated. Grasping for words is much greater now than three years ago when I was diagnosed in Toronto. I realize they can’t legally diagnose the living. However, with all the research and experience, the medical community now has the tools to come to a more than fair conclusion. Five years from now it will be even more honed.
Here is my road.
Janet, my wife, has filled in some of the potholes prior to me reaching them. She has to be one of the most pro-active people I know. Whether or not you are pro-active, as the patient or the caregiver, it is important you do as much research as you can.
Your local Alzheimer Society can give you a lot of information, and will be able to steer you in a pro-active direction.
Here in Edmonton, the Society is as good as one can get. And I will assume the same for others, in Canada and the United States.
Your family doctor is the first one to consult. I had a sense that my memory was wavering. I already alluded to the fact it always wavered. Now it was speeding up. I decided to go to our family doctor. I told him of my suspicions.(Of course, I knew I couldn’t have Alzheimer’s!) All I wanted him to do was to refer me to a memory clinic. He ended up referring me to Dr. Sandra Black, at
3
Sunnybrook hospital in Toronto, who I later learned was
recognized in Canada and the U.S. as one of the top in memory research. I was very fortunate.
I should be honest with you. When I said, “I decided to go to my doctor,” it was actually because my wife Janet told me I should go and get my memory checked out. It usually takes someone to get us moving! If a family member just suggests you should go for a check-out of your memory…GO! He or she will likely be wrong. You and I know that. But just out of respect, relieve their concerns. That person who loves and knows you could be right. If for some reason, heaven forbid, you need further testing, YOU WILL BE AHEAD OF THE GAME. I am ahead. Not because of being smart… I listened to Janet, and together we are both ahead.
ALL THE DETAILS?
I could give you all the details of the following three years. I would if I thought you were suffering from insomnia. So the capsulated version will have to do. It was three years of testing, and more testing. (There you have it.)
After all of that, I was informed, with all their medical research Dr. Black could safely say, “Mr. Fost you do have dementia.” as in Alzheimer disease. It was then she added, “You are ten years earlier than normal”. For me the KEY was…now I know. I can deal with reality.
What was important to me was to have it in perspective. As we drove from the clinic, heading home, I turned to my wife and said, “Wow Janet, I am very fortunate as I think about the kids in countries who have had limbs blown off from their bodies. There are so many kids who are homeless”.
4
No matter how bleak the picture, there are many…no, many, many people, who are not as fortunate. To heck with the stumbling block, there are things to be done. Our perceptions change to what is really important and not important in life. After all it is short.
BUT WHAT ABOUT YOU?
Here are some thoughts from someone who has been traveling three kilometers (1.8 miles) down the Alzheimer Road. There are probably another five or seven to go…hopefully more.
Read this paragraph slowly:
If you sense, your memory is not as it was, DON’T pass up an evaluation in favor of assuming it is only a natural progression. I hope it is, but it is worth the effort to be sure. The earlier the diagnosis…the more can be done. I have that benefit, and so can you. (Read this again, it really is crucial)
Have faith in the professionals. They may miss something. But it WILL BE RARE. I haven’t experienced it as yet, which means the odds are with me. The attention I am getting here from Dr. McCracken in Edmonton is A-1. I would suggest the odds of getting a B-1, might be 1 in one million….maybe. They take their work seriously. I definitely don’t want to guess why, as I could get in trouble. So, knowing some have glasses, I will say this quietly,
Psst…Most of them are getting to be our age and they want to get all the information they can. Hey, if they are pro-active…I want to be pro-active. Shhhhh!
PS to doctors…the above last two sentences are not for you; rather it is for us laypeople.
5
If you are diagnosed by a professional in the field of dementia, and you don’t have the disease, it was NOT a waste of time. You will have learned much from the experience.
If you have a negative diagnosis, then you were likely to have been pro-active and will benefit from the earlier information.
BACK IN TIME
Now I want to go back in time and do basically a brief history as to how I arrived here Edmonton, Alberta. It will give you some sense as to how I am able to deal with this monstrosity of a disease.
I was born at St. Clare’s MercyHospital in St. John’sNewfoundland, 1944. If you are curious as to my age, start with today’s year and subtract 1944. If you are incorrect you might be in metric!
Over the years, I was very much involved on a volunteer basis in working to bring churches together within the St. John’s area. One of my passions was to see churches working together rather than being suspicious of one another.
Up to 1969, I had been, to some degree, in a family business. In 1969 I turned 26 and was asked to go on staff with the Billy Graham Evangelistic Association in Minneapolis. After four years, and getting married, I returned to St. John’s and in 1975, started the first franchise company in Newfoundland. There were, at that time a number of franchisees but no franchisors.
6
A little deeper into the medical situation in our family:
In the meantime, when our younger daughter Sherri was in grade two, she developed epilepsy. Later she was diagnosed with having a global learning disability, including dyslexia. It is the reason, you will notice, the printing of this booklet is on a colored paper versus white. If you are dyslexic, you may find this booklet easier to read. In the meantime, for others, it may not make any difference.
Krista, our older daughter was diagnosed with juvenile diabetes at the age of 11. You will soon see a pattern happening as to why, at this time in life, I do not look at Alzheimer’s as being a hindrance. It has given me another outlook on the future. In the meantime, as I leave the early stages, it might all change.
You may be saying, Dave, just be thankful you haven’t experienced cancer in your family. Glad you mentioned it. I had forgotten. Thank-you!
In 1993, my wife Janet discovered a lump in her breast. As you will guess, she was diagnosed with Breast Cancer. When she received the diagnosis I was in Albuquerque, New Mexico. I called her that evening and she gave me the results…positive. OUCH! That night was the worst I ever had in my entire life, even counting up to this day.
7
The next night I canceled a later trip to Texas and headed home, which was then in Ontario. Before I go into the next paragraph, I want to reveal something so you do not give me the credit. Janet is one, like her late dad, who NEVER looks back. If the house burned down, she would not be fazed, only to say, ‘we need to put some things in order and continue’. As for me, I would want to deal with the idiot who set the house on fire. Not to mention the loss of goods. Forget the reality there was no loss of life. Well, maybe I wouldn’t be that bad.
Then many years ago I realized God did not give Janet a rear view mirror. He didn’t need to. Mine went across the entire car. Due to HER philosophy I learned what is important in life. As a result of that, I was able to lie in that hotel bed in Albuquerque, and say, “God, you know I am selfish. You know I do not want to lose Janet, but I do want to ‘thank-you’ for allowing me to have her for the past 20 years of marriage”. As of this writing it is now 32 years of marriage. As we say in Canada, ‘not bad,eh?’
Why would I share that? The reason is that we cannot predict the future. We need to prepare in advance for the loss of a limb, other parts of our body, and yes even Alzheimer’s. No two people will respond equally. We do a disservice if we compare. If we all responded in like manner then we would have the same personality. How boring that would be. Unless of course, you were all like me…then we would all be boring!!! I am thrilled I have the rest of you.
8
Now it is time to switch,
and deal with issues, many of which you will be dealing with IF you are diagnosed positive. Note I said many…not all!
Since I had been doing the early research, with Dr. Black and her staff in Toronto, and knowing her impeccable credentials, I wondered what would happen in Edmonton.
Now, since moving here, I noticed I have been just as fortunate. I am not too swift, but I suspect any doctor you choose will be very experienced. My point being, you are likely to have a top rated ‘consultant’ in every province and state. Look out for that person. Dig; Research; Ask. ALWAYS check out a local Alzheimer’s Society. You can’t go wrong…unless the situation is ‘denial’. That is hard with which to deal. It is hard for the patient and the caregiver.
So let me say the main item of which we are afraid is the loss of our driver’s license. I will deal with that later and what I discovered to dramatically reduce that anxiety. I say that now, just to let you know, it is important for you to take one step at a time. So hang in with me and you will find one item that will make a difference.
Hey, I am a guy, which you figured by my name ‘Dave’. I won’t speak for the women, but I do know it is crucial for us guys to keep our license. That may not be politically correct. However, in reality…Hmmmm…we would say, “Take my wife, but not the car”! It is h-a-r-d….real hard. So let us continue to lay some ground which can make a difference in the early stages of Alzheimer’s.
9
WHAT ALZHEIMER’S IS NOT
1) It is NOT fun for the patient
2) It is NOT fun for the caregiver
3) It is NOT fun for our friends.
IT CAN AND WILL HAVE FRUSTRATING MOMENTS
As a patient, we can turn it toward opportunities, at least in the early stages.
There are OPPORTUNITIES to
1) encourage those friends and caregivers who are coping with our mutual relationships and to,
2) encourage others who have various diseases or people who feel their lot in life is a ‘wasted life’.
Before we do that, we have to deal with our concerns. If we omit that issue, then we set ourselves and other people in our lives, toward a rocky road. Again, I am talking about the early stages.
One of the main issues is a feeling of stupidity. I can’t commiserate with my friends in the same way. I notice I have to work a little harder to communicate. My processing has slowed down. In my case, I could let you know “I am going home on the, the, the, oh shoot, ahhhhmmm oh yes, BUS. I am going home on the bus”.
10
Here is a problem: Yes, I communicated, but not smoothly.
My brain couldn’t process in my normal way. Hence, people are going to think I am slow or just plain stupid. If I know them, they know it is not me. I know I am not stupid.
A strong memory wasn’t my forte. In fact, when I was 40 I would kid people and tell them I had early dementia. When they ask when I first noticed it I would tell them I was 11 years old. OK, it wasn’t that bad.
How can I get around the problem, as it is not likely to get better? HA, NO PROBLEM! Again this is what works for me. BE OPEN. I refuse to hide it. It makes people more comfortable. So, back to the bus. When I begin to falter, I simply say, “Hang in there, my Alzheimer’s is slowing down my process.
SUPER! I know they know I am not as coherent as I was. Even better that that, they know, I know, they know, I am pretty smart. Well, not pretty…but smart.
You see, that is with the strangers. With my friends, it is a different matter. They know I am stupid. Just kidding! You see friends are friends. They know how you are, and at the ‘entry point’ of the disease it makes no difference as long as you are comfortable.
11
IF…you have that attitude early, your friends will be able to deal better and longer with your situation. If you are not comfortable it will stay with you well down the road and of course, vice versa.
You and I will deteriorate over years, with or without alzheimers. Setting the positive attitude early will set you in a better position down the road. Not to mention that the burden will be just a little easier as a result. To know that is somewhat of a relief.
ALLOW PEOPLE OBSERVING YOU IN LIFE.
This past March, 2005, I went to St. John’s to attend the funeral of my father. He had passed away with bone cancer. About the second day at the funeral home, a man who I knew came in and I couldn’t remember his name. Then the ol’ Alzheimer’s kicked in. I told him I had forgotten his name. I was hoping he had forgotten mine. At least we would have been in the same boat. Darn, he hadn’t. Just my luck. So I asked him his name.
This you won’t believe, the next day he came back with a friend or his wife (Why should I remember, I have Alzheimer’s, remember?) So I looked at him as he walked toward me, and asked, “Would you mind if I ask you a personal question?”
“Not at all Dave, go ahead,” he responded.
So I responded to the response, and in a serious tone, said, “What was your name last night?”
12
KEEP PEOPLE RELAXED AND COMFORTABLE WITH YOU. If you don’t, that is fine. I am going to do it anyway. WE will all do it differently. You DON’T ever have to apologize. Do what works for you. Note, I did not say comfortable. It is what works to benefit you, your family and friends. You decide the order.
Back to the funeral and one more antidotes. One evening a man walked toward me with a look of pain on his face. You know the one we usually put on when we wish to convey concern. The
stranger, who was obviously once my friend, but now with no name, put his arm around my shoulder. Then he said, “I just heard you have Alzheimer’s. Dave. I am soooo sorry”. In a feigned look of horror on my face I respond with a sudden, “I DO?” Suddenly
there was a look of shock and horror. “YOU DON’T? To which I calmly responded. “I do”.
He was then at ease, and we had a wonderful conversation. Here is something that also happened as a bonus. First he approached me with pity. Then it suddenly changed to being normal.
Once again, Alzheimer’s is not easy. It just becomes easier when we look at the Stumbling Block and then focus on the Stepping Stone.
I know there will be a time when I will forget everything and everybody. I cannot help but believe that if one has a positive attitude in the early stage, it will help them carry that attitude further down the road. So for the benefit of those whom I love, or even have just met, why not initially attempt to be positive, as early as possible. Maybe, in my mind, not by any research, it might allow me to be a crotchety old scrooge a little further down the path.
13
There are things we can’t control, such as certain diseases. Our responsibility is to control the things we can. Make it better for ourselves and others. As a bonus, more people will look forward toward your staying versus your leaving! With or without a disease it is just a wonderful way to live.
NOW ALLOW ME TO SWITCH GEARS
Here I want to hit a few specific subjects.
Suspicion:
When will I know I am suspicious and might have Alzheimer’s or some form of dementia? You probably won’t! MOST will deny it… period! I am referring to being pro-active. Please forgive me for being repetitive on some issues. And no it is not that I am forgetful, and it is not because I think you are forgetful, but someone else reading this booklet might be forgetful. Obviously neither you nor I….maybe!
My mother-in-law never accepted it. For her it would have been devastating. My mother…the same. An aunt called her one day and told her she heard she had Alzheimer’s. “How dare you say that,” she responded.
Looking back over those earlier years, I wish I could have chatted with her on the subject each time I went back home for a visit. If it had been explained to her earlier she might have been less frustrated while trying to process words.
14
You see, I get frustrated trying to cope with words when chatting with people. However, I am not embarrassed because I accept it and allow people to share the ‘secret’. It is simply, “Hang in there, I am trying to process”. We all need to be together and understand each other.
If there are strangers, I might look at them with a grin and an “Ooops, hang in there, Mr. Alzheimer’s is not helping me out
here.” They are taken off guard, and they usually chuckle. Why? I
gave them permission in my expression and short words. Quite often we kid back and forth. The extra plus for me is that they have accepted me knowing I am not different. There IS NO pity.
Who knows, that person may have had an impression planted on his or her mind, that maybe…just maybe… their own problems are not insurmountable.
Is that how you should approach it? Maybe…maybe not. You may have a way that puts mine to shame. WE ARE DIFFERENT! I would love to hear how you do it. We have to be open with each other. And I do understand. We have to earn the right to be fully open.
REMEMBER AGAIN TO STUDY AND RESEARCH.
We said it before, ‘it is being pro-active’. I just want to re-emphasis it to illustrate that importance. This is not a medical booklet. I leave that for the professionals. If you don’t have any current direction, contact your local Alzheimer’s Society. The INTERNET would have a boat load of information. Personally, I would avoid overload and start with the Alzheimer’s Society.
15
ORGANIZE
Obviously, one doesn’t get Alzheimer’s at the minute of diagnosis. Most likely, your spouse, partner, close friend began noticing a very slight change in memory and behavior. The start was some time previously. You knew you never had the best memory in the world. That is fine. I never had the best memory in my family, or even in my neighborhood.
However, Janet began to pick up some subtle differences. Well, what did she know? My older daughter Krista picked up some subtle differences. That was silly. ‘I knew me, and me knew I’, as this Newfoundlander thought. I knew I wasn’t the sharpest knife in the drawer, when my younger daughter Sherri, agreed with the other two.
It was then; I realized I didn’t even know the location of the drawer that contained the other knives. So you think you have a problem??
About 2 weeks after starting this booklet, I literally contacted three people, with whom I worked, who would be very open and honest. They were three previous employees and were with me before I began to notice my changes.
Would you like to know the brutal questions I asked, knowing they all would be totally open and blunt?
16
Allow me to keep you up in the air a moment, so you will then know why I am suggesting organization. As an example, I have a problem finding things, more than usual. I would get up in the morning, go to the shower, and then proceed to find what I needed. I would look in the cabinet and everything was a mass. (OK, maybe a mess). Part of that is also a dyslexic situation that compounded the problem.
So one day I decided to arrange EVERYTHING on the counter. Forget the cabinets. So now in a line, one will see the deodorant, the toothpaste, brush, mouthwash, razor, etc. Be assured I do use those things! The issue is not aesthetics but reduced frustration.
In the kitchen it is the same. Then there was another issue, and that is the stove. After a few, how shall I say it…close mishaps? Not as serious as Janet thinks it is, and of course I know better, we had to go into plan A. She wanted me to keep EVERYTHING off the stove. She was a little more safety conscious than I. I couldn’t deal with Plan A so I went into Plan B. My idea looks dumb but it works. So onto the computer I entered in LARGE letters:
DEATH ALERT
Nothing on Stove
17
I taped it on the top back of the stove (facing out, of course) and on the range hood, on colored paper. Does it look tacky? You bet it is, but the fire department hasn’t been here, as yet. Would that be pro-active? You betcha!
I am not likely to improve with the disease, so I might as well make it easier for both of us while I am 75% normal, in my mind.
That is not a medical conclusion, of course.
Revise the contents of your wallet, if necessary. It sure helped me. I made up a grocery list so when I go out with Janet, the items we need are checked off. It saves me confusion and frustration.
Pills? No problem. I have on the corner of the kitchen table, stuck on with clear packing tape…TAKE PILLS!!!!! It is on green paper. I might change it to a hot red or a flashy yellow paper. The issues are not aesthetics, but rather it is reduced frustration and a medical insurance. The Insurance is that we take our meds.
If aesthetics is important, then be creative in other ways.
So organize. Does that make sense? Yes_____ or No_____
18
OK…the comments from my friends.
To put it in perspective, I was directing teams over the years. As a Director, it was my responsibility to insure everything went well in various cities throughout Canada and the United States. One of my major passions was to help the Assistant Directors to hone their gifts. It was crucial, in my opinion, to let them develop so they would be the top of the crop. It was also important we be professional. I guess my philosophy was, and commuted to others, that ‘it is necessary to be the best in integrity because what we were doing was important. In the meantime, we must have fun doing it’. I personally would find it confining to work with a bunch of stuffed shirts. Life is too short for that.
Understand, these were solicited from three people. Close friends and business associates. These are the changes they saw and wondered why ‘Dave is changing’. After I received the diagnoses, they understood, as Alzheimer’s changes the brain.
Willy (Ontario): Watch how as he sets it up to point out the vast differences from the normal years to the last three years. I will put his comments in italics yet condense it for brevity. “Once was the humour – his ability to bring out the lighter side in any exchange …fun in the workplace…his trust. “Dave brought me into his trust…count on the support and care that genuine friendship offers…resolutely positive approach to catastrophic issues”.
19
Now observe difference from Willy’s comments above to the changes he later noticed as I progressed with the disease. He says, “With the announcement of Alzheimer’s it was difficult to see any evidence of change. By the second and third year, Dave’s frustration level seemed to be increasing. Because the work setting, by itself was generally filled with the tremendous level of stress it was often difficult to determine whether what I saw was the result of that or from Alzheimer’s”.
He continued with some more comments such as, “More repetition…an increase in mistrust…micro-managing…more dogmatic…leadership became harsher…repetition of thoughts and concerns…Dave’s field of vision was getting smaller”. Here is a good one, “Dave was always very demanding on himself when it came to public presentation. He prepared carefully, often choosing words, thoughts, stories, jokes very deliberately. I began to notice a loss of confidence in himself. He didn’t stop doing them, but there was more and more stress for him as he faced these occasions, and then more relief after they were done”.
20
Chrystal (West Virginia): “We once were expressing surprise and concern for you regarding something you reacted to something normal for you. You were majoring on the minors.”
“Some things that hadn’t seemed a priority in the past, became things that had to be completed with perfection, in your eyes. Sometimes your occupation with the project became a consuming passion”.
I also began to have a problem with driving directions. It wasn’t a problem driving the car; it was just getting from A to B. Heaven forbid, if I had to drive deeper into the alphabet. So Chrystal also pointed out on her email that, “in some instances come to mind of details on maps or directions that in other instances hadn’t taken up so much time or intensity”.
Her thoughts would have been similar to Willy and Gary’s below.
GARY (Iowa): Gary’s comments were, overall consistent with Willy’s and Chrystals. “Over compensating…you gave an unusual amount of trust to your team with very little follow-up. Your secretaries took really good care of you. How was it without their help?”
WHY…WHY…WHY?
21
Why would I be so candid as to reveal the comments from my friends?
Well, I trust them. I know they are honestand I cannot deal with a lack of reality. I can only work in the world of reality. Once I know what is real then I can move on reality vs. unreality.
A few years ago when a surgeon thought I could very well lose my left leg within four months (due to hereditary high cholesterol), then I KNEW what I had to do. In fact, I told him there would be a positive to it. I would have one less foot to put in my mouth.
Reality allows me to head in the right direction. Got that?
REALITY ALLOWS ME TO BE PRO-ACTIVE!
What wonderful opportunities we are given to learn in life.
My daughter Krista called me when she read the above comments from my concerned friends. She asked, “Dad, how did you feel when you read those comments? You must have felt crappy”.
I told her I felt wonderful, and why I did feel that way.
You see, it is not about me, it is about you, the reader of this booklet. I wanted to tell you the unvarnished truth. Chrystal, Willy and Gary knew me enough that I wanted to connect with you from the perspective of truth. Not some wishy, washy garble so you would be satisfied with some pie in the sky unreality. It is crucial you come to understand the reality of Alzheimer’s, and as to what you need to do, by being pro-active in a positive and truthful manner.
22
The issue has nothing to do with the ‘lousy’ changes in my personality, only that you prepare for you and your loved ones. It is an opportunity to allow others to see how you cope. Your coping mechanisms will be enhanced when you are ready to ‘go and do your thing’. You WILL get a lot of assistance when you discover what is out there.
As an aside and for the fun of it, when I was advised the possibility of only one leg, one of my nephews asked, “Uncle Dave, if they took off your leg, where will they put it?”
I hadn’t thought about that. It wasn’t exactly my major problem. However, when a concerned nephew poses such a question, it demands an answer. So, I said, “Buddy, when we die, we go to the section of the cemetery with the head stones. So it is logical my leg will likely go the section with the foot stones.” (O.K. a groaner!)
You, my wife, and I still have a lot of opportunities to be involved in the lives of others who have the disease. In fact, Janet will likely have another twenty years over yours truly. I am the one with Alzheimer’s.
23
WHO IS THE LUCKIER…JANET OR ME?
Approximately four months ago we attended a seminar on upcoming drugs and research. A gentleman in the audience made the comment that he was not concerned for himself. However, it greatly concerned him about his wife, as he progressed down the alzheimer path. He could only imagine his condition and entire personality going down the tube. Would he become even more impatient or even violent? Nasty? It had become a major issue for him.
I would imagine most patients would feel very similar. I did. I would lie in bed and think about what Janet would come across down the road.
So after that seminar was finished and we got in the car, I told Janet, not being the first time, as to how it bothers me.
Then I said, “Janet, I wish we could change places so I could be the caregiver for you”. SUDDENLY, along came a flash, and I exclaimed, “WAIT NOW, if I was the caregiver you would have the disease. And I would NEVER, EVER, wish something like this for you!”
Any guilt I had was suddenly negated. If you have Alzheimer’s, think how fortunate it is, that your family doesn’t have it.
ALWAYS TURN THE NEGATIVE TO THE POSITIVE.
24
Now the tough one…OUCH!
Losing the license
I hate this one. HATE IT. Do you get the idea I don’t like it?
Earlier I mentioned we would get to this one. So here goes…
…It WILL happen that the day will come; you will be relieved of your driver’s license.
Remember females, as much as many of you will not wish to go down this path, any more than the males, that day will come. It might be a little more frustration for us guys for a couple of reasons.
1…More males are in love with their cars. Females are more logical.
2…Females wash their vehicles, but who are the nuts who are freakish about it.
3…Women usually have more common sense.
Like many of us, Janet and I drive. She is a great driver. When we drive on a trip, which usually I do most of the driving? M-o-i! If you are slow…Moi, as in English, ‘me’. When I ask her to drive, she usually says, “No Dave, you drive.”
Oh the pressure she put on me. Yeeesssss!
25
You get the point. However, whether it is male or female we balk at giving up our license. How can we be pro-active? You would never let the license go any faster than I. Here is what I discovered…by accident, so to speak.
There is something in my system which I cannot explain, and neither has anyone else. There is a period, in most days, where I lose much strength. I have to lie down until it passes. Ahhhh, that came out wrong.
When Janet and I are to go somewhere, and I feel it coming on or I am toward the last little part, I ask Janet to drive. Why? I would rather die, than possibly hit some child or adult, simply because I think I am fine to go.
As a result of those situations, I am getting use to her driving on more occasions. If I did not have, what I call, “crashes” (weak feeling), I would find it much harder when that day comes and I find they pull away my license.
LISTEN PLEASE…
…When that happens, trust your caregiver and the license bureau with the benefit of the doubt. We have to play it safe because there is a lot at stake. It prevents you from killing my grandchildren and me for killing yours. OR someone exterminating you and I, hence depriving them of their grandparents. DRAMATIC? Yeah! But a possibility never the less.
26
Here is my suggestion.
Start early by allowing someone else to drive. Today you might drive from A to Z. Over the next few weeks or months just go from A to M. Then for some weeks or months, drive from A to K. Do you see what is happening? It may sound childish, but only because of my ‘crashes’ I don’t mind not driving all or most of the time.
It was a bonus to have dealt with the other situation and insure there are much less opportunity to do something fatal on the highway.
Hey, but I am totally fine at this moment. Wonderful, because it is time to practice for less driving.
A number of years ago, the late Red Skeleton came to Toronto. What a wonderful clean show with lots of laughs. In one stand-up scene, he went into his Sam Kiddlehopper character. Remember that unusual accent, when his bottom lip touched his teeth? So he says,
“Hey a few weeks ago my wife told me she was a better driver than me. I told her I was a better driver. She told me she was a better driver. She said she told me she could stop on a dime. We argued for 30 minutes. No you can’t. Yes I could. Then I gave up”.
Guess what, last week I was in the car and she was driving. Sure enough, I couldn’t believe it, she stopped on a dime. Hmmmm. To bad it was in the guy’s pocket”.
27
The weak point of the story…”Know when to hold ‘em and know when to fold em”. Remember Kenny Rogers.
Let us not be like the seniors sitting around the pool talking about their ailments.
‘My arms are so weak I can hardly lift this cup of coffee,” one said.
Another said, “I couldn’t even mark an ‘X’ at election time, my hands are so crippled.”
One of the guys told them he can’t turn his head because of arthritis.
Another said she could hardly walk because she was always dizzy on blood pressure pills.
One old guy forgets where he is going.
“Oh well,” said one, I guess that is the price we pay for getting old.
They all nodded in agreement.
Then one cheerful woman spoke up, “Well we can count our blessings.”
THANK GOD WE CAN ALL DRIVE!”
One day when we have to forgo our drivers license, ‘we will do what we have to do’, won’t we!
28
I mentioned Krista being diagnosed with juvenile diabetes at 10 years of age. I remember, one day when she and I were at the KidsHospital in St. John’s, Newfoundland. We decided to run around the hospital for her exercise.
When I ran out of steam she and I stopped. She looked up at me and said, “Daddy, there is a good chance I will die earlier, isn’t there?”
Knowing she was reading everything she could about juvenile diabetes, I looked at her and said, “Krista, if we are going to look at the statistics, you are right. However, with the way you are treating your diet and for all the exercising you are doing, you may very well live longer than most of us. Not to mention the years you are putting on me with all this exercising.”
She had a beam on her face as she said, “Daddy, I didn’t think of it that way. I think you may be right.”
What an enjoyment you and I can have in life as we look at all the possibilities we have, in these early stages.
Now for a BIG BONUS
29
As you go through the process there will be a point where you might have an opportunity to get into a study. Why is a study such a bonus?
When I was in Toronto I was part of one, or was it two? It means I got an incredible amount of attention. I never look for attention, however, in a medical sense I will take all the attention one wishes to give.
Here in Edmonton, I was asked to be in a study for a medical company studying a new medication. They are hoping it will arrest the Alzheimer’s or maybe, possibly, cause a slight reversal. I had to fill out some forms, etc. to insure I qualified. If I hadn’t I already had additional screening. That was a little bonus.
Well, I was accepted. I will be on it for 1½ years. Instead of periodical tests, I get them every couple of months, roughly. In other words I am monitored.
Here in Edmonton at the Glenrose Hospital Dr. McCracken is the doctor in geriatrics and also works with people with any form of dementia.
You might think that sounds like a commercial. Well, maybe it is my commercial. If there is a benefit for you, it is a bonus for all of us.
ALMOST TO THE END
CAREGIVERS
30
Please! Please! Please!
This is for you as you have the major responsibilities. I learned a few thoughts since writing this booklet. Here are some REALITIES:
1…Your heath is #1. It is the only way you can be totally effective.
2…Most of you have a tendency to lay unnecessary guilt upon yourselves.
3…PLEASE…DON’T say you can’t take an afternoon for golf, or a couple of hours to have coffee with A FRIEND. Your spouse, partner or friend will manage with a temporary caregiver for a few hours.
4…Here are three thoughts came from my alzheimer ridden brain. A brain that cannot supply the disease a ‘full meal deal’!
31
Alzheimer’s patient DOES NOT need a
SUPER-GIVER!
He or she DOES need a
CARE-GIVER!
A SUPER-GIVER
will burn out quickly with added guilt.
A CARE-GIVER
will do the very best he or she can,
by allowing others into the process,
without taking on the guilt.
Dave Fost…September, 2005
32
It is IMPORTANT for us
to meet people where
they are and not
where we want them to be.
Dave Fost…October 2001
MAD COW DISEASE
Maims and kills the body.
MAD GUILT DISEASE
Maims and kills our soul
And spirit
Dave Fost…September 2005
33
The bottom line is this:
The level of your health equals the level of your care giving.
Dave Fost…September 2005
Here are some points for the one who is in early onset of the alzheimers disease
.This booklet is for you, your friend, and your older children who could be a real bonus for you (No matter what disease is in your family)
.If you or your loved one show any signs, have it checked out by a medical doctor in the area of dementia
.Keep your friends in the loop and allow them to know what might happen down the road, and that you will need them
.Get all the information you can gather. Check with your area Alzheimer Society
.Keep everything in perspective
.Be natural
.Decide to make your situation a stepping stone 34
.Organize your items
. Insure your financial affairs are in order
.As long as you are open, people will understand
.Down the road, check out the BIG BONUS
.Finally and most importantly…
BE
PRO-ACTIVE
I am on your side along with many others!
Dave
35
bgeadf@hotmail.com