How would you feel if...you had taken a trip to a foreign country where you didn't speak the language. You didn't know how the pay phone worked. The customs are different. Ordering food in a restaurant proves difficult. When paying a restaurant bill with unfamiliar currency, you might fear that you are being shortchanged, cheated. Tasks so easy at home are major challenges in an unfamiliar setting and can be exhausting. The person with dementia is in a foreign land all of the time.
Persons with Alzheimer's disease commonly experience these emotions and feelings: ~worry and anxiety; frustration; confusion; loss; sadness; embarrassment; paranoia; fear; anger; isolation and loneliness.
To understand someone, you must "walk a mile in his shoes." When you do walk this mile, or run this marathon, as many caregivers feel, you begin to see one of the underlying surprises......the so-called inappropriate behaviors of Alzheimer’s disease are not all that mysterious or out of place. They often stem from the person's efforts to make sense of his or her world, to navigate the maze of dementia. If any of us were afraid of something, if any of us had to give up most or all of our favorite activities, it would be perfectly normal to be sad or anxious, to hide things, to wander away from a possibly threatening situation, to leave the house if we think we're late for work, or to strike out at someone we think is trying to hurt us.
**The feelings of loss, confusion, and even anger are normal feelings caused by dementia.
**People with dementia are working very hard to make sense of their world, to see through the confusion and memory loss.
*"Walking a mile in the shoes" of the person helps us overcome denial and gain acceptance.
**Taking time to think about the experience of the person helps us develop empathy and be a more caring and effective caregiver.
Try this to help you understand the impact of dementia:
Take five small pieces of paper.
On each piece, write one of your favorite activities. (A typical activity might be visiting the grandchildren, taking a day trip in the car, enjoying a favorite hobby, going to work, trying a new recipe, playing golf, or talking on the phone with an old friend.)
After you are through, select an activity, think about how much you enjoy it, and then imagine giving it up.
Take the piece of paper listing the activity, wad it up, and throw it away.
Continue to do this until you have discarded all five pieces. How do you feel?
The odds are that you are now experiencing the feelings of loss that many with dementia feel. Sadly, their losses are real, not "paper losses." Worse, they cannot choose the things to give up. That choice has been made by Alzheimer's disease.

We all worry or become anxious at times. I worry about having enough money to pay all of the bills each month.
Almost all of us occasionally misplace car keys. The keys turn up eventually, but the search can be very frustrating. I can't imagine losing them every day, every hour. I have lost my house key and I still haven't found it.
What if your friend didn't show up for a lunch date? Did you get the time and date wrong? Did she get in an accident? What if you tried to call and they didn't answer? For many people with AD, confusion is a daily experience. The person is never quite sure about anything.
We normally define ourselves by our jobs, our relationships, or the things we do. A banker, a farmer, I am Keiths mother, I am a fly fisherman. If any of us had to make a major change in life and these roles were taken from us, we would experience feelings of great loss. People with AD lose these titles and, as a result, lose important and meaningful roles. Eventually, they will be unable to work and will have to give up favorite activities. Sooner or later, the losses mount. Sometimes, we caregivers tend to focus on our own losses and forget to acknowledge the losses of the person. The person with AD experiences painful loss day after day.
All of us experience moments of sadness. Perhaps you remember a failed relationship or the loss of a beloved pet. Maybe a poignant story on the news makes you teary. Sadness can be fleeting, or it can be long-lasting and associated with a profound grief process. Like happiness, sadness is a part of life. Feelings of sadness are often pervasive among people with dementia. A person can burst into tears at the thought of not being able to tell a story all the way through or at forgetting a name. A person can also feel sad over long-term losses, such as having to move out of a family home. People who do not have dementia can develop strategies to overcome sadness, people with dementia lose this ability to work their way out of sadness.
All of us can remember a time in school when the teacher called on us and we did not know the answer to a question. You might recall your collar tightening, voice faltering, palms sweating, and face blushing. The person with AD is in a giant classroom every day, one in which he or she never has the exact answer. A woman who always prided herself on her appearance may have someone point out that she is wearing her jacket inside out. Names are easily forgotten. Embarrassment is common for persons with dementia, particularly those in early stages who are more aware of their mistakes. Mixing up identities is a common occurrence for people with dementia. They begin to forget faces and sometimes can be confused when people look alike. They may confuse genders, thinking a woman with short hair is a man and that a man with long hair is a woman. Declining vision and hearing can make the situation worse.
If your boss starts treating you differently, you may wonder if he or she is unhappy with your performance. If you see a strange car outside your house several days in a row or if someone is standing too close to you at the ATM as you're withdrawing money, you may become alarmed. Even the most well-grounded individual becomes a bit paranoid in some circumstances. People with AD often look for an explanation about what is happening to them. Why does their family refuse to let them drive? Where is their money? When they cannot find rational explanations, they sometimes experience bouts of paranoia, imagining that someone is trying to harm or hurt them in some way. Delusions, or fixed, false ideas are extremely common in persons with AD. Paranoia is a by-product of these delusions. Hoarding or hiding things is common for persons with dementia. They may be paranoid that someone is stealing things or simply trying to keep track of their valued possessions.
All of us become fearful now and then. Perhaps you're walking in a big city late at night and hear footsteps behind you. Maybe you're afraid of earthquakes or tornadoes, spiders or snakes. Individuals with dementia also have fears. These may include the loss of independence, placing too much burden on family members, and getting lost. Other fears might include traumas from the past that have risen again in the present and fears caused by delusions. Misperceptions of vision or space can subsequently lead to a fear of falling, particularly if the carpeting on the floor has a confusing or misleading pattern.
All of us get angry occasionally, and although no one wants to bear the brunt of it, anger has a constructive purpose: It can help us fight a battle if threatened. It can release harmful stress and pent-up emotion. Also, sometimes getting something off your chest by becoming angry can lead to healing in relationships. It is a myth that all, or even most, people with AD are violent. Yet, people with dementia can become angry. They may not always understand what is happening around them and to them. Anger can also stem from a loss of control when they feel rushed or unduly pressured to do something.
If we broke our leg and had to curtail most of our activities for 4 to 6 weeks....we couldn't go to work, we couldn't work out at the gym, had to give up the opera tickets, and had to cancel outings with friends. During that time, it would be long and lonely. Our first day back at work would be the happiest in our life! As AD progresses, isolation and loneliness often increase. The person can no longer drive and may no longer be able to play a weekly bridge game, go sailing with friends, do woodworking, go shopping, or even walk down to the neighborhood doughnut shop. The person loses social contacts; worse yet, friends eventually stop visiting. Unlike a broken leg, the person's memory cannot be mended.
The feelings of loss, confusion, and even anger are normal feelings caused by dementia.
People with dementia are working very hard to make sense of their world, to see through this confusion and memory loss.
Walking a mile in the shoes of the person helps us overcome denial and gain acceptance.
Taking time to think about the experience of the person helps us develop empathy and be a more caring and effective caregiver.

I've read your letter and agree with most of it..However,,I feel that I am ,,always have been,,and always will try to be,,the best caregiver of my Mother that I can possibley be. I have always been very aware of the changes that occur,,and it saddens me tremendously to see this happen. There isn't anymore that I can do,,then I'm already doing. I think that most of us,,as a caregiver of a LO,,realize the 'foreign land" that they now live in,,,cause we are there with them,,watching ,,,protecting, and soothing. But regardless of all that the person goes thru,,,its more of a change on the caregiver!!! We see that we can no longer rationalize with a person ,,,we have to live with someone who is in denial of an illness,,,who developes many many quircky habits now..some of our LO's are happy even though they are losing,,,others change into a person we never knew. I don't want to walk a mile in her shoes,,,I don't have to ,,,,instead,,I put her shoes on her,,,I walk her along the way,,letting her know I'll always be here,at her side. Time will be the enemy of the two of us,,,but in time, when she's gone,,,I will look back with pride,,that I tried my best,,got thru things the best,,and remember the better times.

[Walking a mile in the shoes of the person helps us overcome denial and gain acceptance.
Taking time to think about the experience of the person helps us develop empathy and be a more caring and effective caregiver.[/QUOTE]

Campingnana, my name is Tracy and I was diagnosed with EOAD in 2002, I was only 38 years old. I am now 42 and have been progressing at a slow rate thanks to the medications. I cannot thnak you enough for your last statement. It is not easy walking in either's shoes and we have to realize that no matter how hard and rocky it gets, we have to be strong and keep going. I have been a very outspoken advocate for Alzheimers Disease the last 4 years. Though your post was too lengthy for me to completly read and comprehend, I got the message from the last statement and I not only commend you for your understanding, but appreciate caregivers such as yourself with the utmost respect.

quote:

Campingnana, my name is Tracy and I was diagnosed with EOAD in 2002, I was only 38 years old. I am now 42 and have been progressing at a slow rate thanks to the medications. I cannot thnak you enough for your last statement. It is not easy walking in either's shoes and we have to realize that no matter how hard and rocky it gets, we have to be strong and keep going. I have been a very outspoken advocate for Alzheimers Disease the last 4 years. Though your post was too lengthy for me to completly read and comprehend, I got the message from the last statement and I not only commend you for your understanding, but appreciate caregivers such as yourself with the utmost respect.

Tracy Mobley
Diagnosed age 38, now 42

Tracy.....

I was able to attend an Alzheimer's Conference here in the State of Oregon and had the honor of listening to a gentleman who has EOAD. The room was silent as he spoke.

I too will be a strong advocate for the Alzheimer's Association as soon as I see my loved one through the challenging disease. I care for my mother who is 89 and in the later middle stages.

You are to be commended Tracy. It is people such as yourself that will be able to help people such as myself to have a better understanding. The gentleman that spoke to us, spoke about "walking into a fog".....that is what sticks in my mind. I feel fortunate at being able to listen to his speech.

Keeping you in my thoughts and prayers Tracy.

to the top!

Beautiful post - thank you!

Marese

Your welcome Marese!

I hope it helps many of our newcomers

bumping to the top for lilriver

to the top!!!
zerotears

Campingnana,
I just read your statement of 3-16-05,it says so mcuh, explains so much in terms others can understand. Your statement will be helpful when dealing with my clients family and friends, who are trying to deal with her illness.
I am a pvt. c.g. for a woman with EOAD, who lives in Tokyo, Japan, with her husband. There is NO support for English speeking residents with this disease here. It is her husband and I. Thanks so much for you support. djm